Ok DL Doctors & Nurses, Diagnose Me

Your brain has become so large that it's leaking out your eyeballs and nose.

I am just kidding. go see a doctor, ffs, good luck.

It could be something completely weird. My dad had a fungus growing in his ears and it spread throughout his sinus cavity. The world is strange, get your head checked and every best luck to you.

I hate when strychnine is used over time in a torture dose.

Not that the outcome ever is in doubt.

Good luck, OP!

Pregnant.

Could be an infected tooth that has spread. Have they done blood work to see if you have an infection?

Infections can also hide out in obscure pockets of the sinus and even the tip of the nose. They can be very hard to track down and fully eradicate with antibiotics. Not sure if they go in and scrape it out or what.

If you are not in an HMO, get a second opinion stat. The dentist won’t be able to do much but why live with the suffering? Pay out of pocket if you have it.

I learned the hard way recently with a foot issue. Three doctors later I finally have an answer.

brass tacks you need to get a diagnosis and then attention for whatever it is.

Can I have your stuff?

Do you have allergies?

I had a similar experience years ago, minus the numb teeth & tenderness around the eye socket. When what was originally thought to be a sinus infection wouldn't go away my PCP sent me to an ENT who eventually sent me to an allergist and it ended up being a reaction to mold exposure.

I stayed my uncle's house for two months back in 2009, his house had been empty for a year but one of the toilets had been running all that time and created a mold situation. Fortunately I was only staying there while I waited to move into a new apartment because moving was the only thing that provided relief.

A couple years ago I kept going through very painful rounds of head pain, but I couldn't tell if it was a bad tooth, or a sinus infection or advanced brain cancer the pain was so bad.

I got an ENT doctor to prescribe me antibiotics and prednisone, but after a more thorough exam he told me I just had very narrow sinuses and they were inflamed, which could be for a number of reasons including allergens or stress. I was in such pain I was grabbing any painkillers I had on hand and suddenly one actually worked, Aleve, which I believe is naproxen.

It never worked for anything ever, but helped with my inflamed sinuses. Who knew?

Are you still with us, OP?

Do you live in a state with medical marijuana? I would buy some edibles with cbd and that should take your pain away. sorry for your issues

Could it be Shingles, OP? My Dad has similar issues and was diagnosed with Shingles. His was on the left side of his head.

Seems nerve related. Could be infection of viral or bacterial variety (or shingles) or other underlying cause. If you don't want to wait and can afford the ER co-pay go to the ER and talk about numbness.

Steroids can mask or even facilitate infections. Your prednisone may have triggered a sinus or dental infection. Your ENT should have caught this, but the CT may be necessary.

How long have you been on prednisone? Side effects include:

Elevated pressure in the eyes (glaucoma)

Clouding of the lens in one or both eyes (cataracts)

A round face (moon face)

High blood sugar, which can trigger or worsen diabetes

Increased risk of infections, especially with common bacterial, viral and fungal microorganisms

Thinning bones (osteoporosis) and fractures Suppressed adrenal gland hormone production that may result in a variety of signs and symptoms, including severe fatigue, loss of appetite, nausea and muscle weakness Thin skin, bruising and slower wound healing

Sounds like rabies. Drink some water because rabies makes you thirsty.

You got a love hangover!

^ Sounds more like a regular hangover...

WHET Op?

Prednisone was my first thought too. Not sure how long it takes to totally leave your system. Get a second opinion. Try NOT to go the ER. Urgent care is good enough. I went to the ER with a bad cough a few years ago, was given a CT scan and my (very good until it wasn't) insurance wouldn't pay for it because it wasn't authorized in advance. It cost almost 6 grand.

OP the progressive numbness is very concerning along with this pain. YOu've done anti biotics, you've seen ENT, Dentist, etc. Now go to the ER. Tell them you think your having a stroke. That way you don't have to sit there. They will prioritize you. Now. Once they get you into an examining room, tell them of the umbness and the pain, and the problems with your eye. Period. Then let them start doing tests. Sometimes we say too much to an examining physician and while you have to be truthful and open about symptoms, don't blurt them out all at once because it will definnitely affect their course of action.

[quote]ENT said if the Imitrex didn't work, we would do a CT scan of my head, but the first appt isn't for 2 weeks.

You need to get that scan done, because you clearly have a brain tumor. You can always go to the ER…tell them you’re having the worst headache of your life, and you’ll get scanned stat.

Hmmm might be Bells Palsy... doesn't that cause numbness? Anyway OP let us know how you are!

Guillain Barre Syndrome. Check it out.

Clearly, you have untreated syphilis.

Next patient please.

I agree with R20 - go to the ER. Something's fishy about that insurance issue, R19. If you went to the ER, and the ER physician deemed your CT to be urgently needed, it should have been covered as part of the visit even if you weren't admitted.

OP, you can call your insurance company to learn the details of emergency coverage if it makes you feel better, but you'll get a CT, and perhaps a neuro and 2nd ENT consult out of an ER visit if you play your cards right. Speaking of which:

[quote]Sometimes we say too much to an examining physician and while you have to be truthful and open about symptoms, don't blurt them out all at once because it will definnitely affect their course of action.

Absolutely correct, and more patients should understand this. If you go in and blab a long history of undiagnosed pain, different meds, different docs with different opinions, you will immediately be pigeonholed as either (a) a hypochondriac neurotic crank or (b) a drug-seeking junkie. Neither will result in your feeling better. Tell the truth, but be judicious and edit how much you say. A key thing is to emphasize that the pain is suddenly worse and excruciating. Sudden, severe head pain is almost as good as chest pain for getting quick attention in the Emergency Department, especially when accompanied by numbness.

Be careful what you wish for, though - you may end up being admitted. That might not be such a bad thing, since the docs will be strongly motivated to do a bunch of tests and get a bunch of consults, which is what you need now.

OK: prednisone and antihistamines plus a side of Imitrex. You have dried your sinus passages and blood vessels that hydrate them to Sahara levels, hence pain. Saline spray to see if that helps. A least it wont be one more chemical to mix up the picture

To add on to R25 You have to help them to see you as important and in need- not just another widget to be moved along.

Sounds like an abscessed sinus infection.

[quote]Your ENT should have caught this, but the CT may be necessary.

I got the order of things wrong, I did have a CT scan as fast as they could get me in. My ENT is an excellent doctor, and a good listener.

[quote] You need to get that scan done, because you clearly have a brain tumor.

OP here. R21 wins the ham. It actually is a brain tumor. I just got home from the hospital. I have to have a specific test early next week that will determine the kind of neurosurgery I need, but it's actually pretty serious. I appreciate everyone chiming in and trying to help and offer advice. I couldn't check in because all I had on me was my phone, not even a charger and I was trying to save my power. Had an MRI and CT scan while there.

Not gonna lie, it's been a big shock. Not really sure where I am right now, headspace-wise. I guess still trying to process it.

OP thanks for letting us know. I sincerely hope everything works out. I am so glad they figured out what's going on. Or at least they're closing in on it. When y ou said numbness and the pain was worsening I had a bad feeling about it. So I am very glad you followed up. A ot of us want to help you (moral support) to get through this. Take care and please let us know how it's going, OK.

Dang.

:(

Thank you, R31. I sincerely appreciate that. Hoping it is survivable, as I have too many things I still want to accomplish before I shove off.

And as crazy as this place is, I definitely feel like it's a community, so it's very helpful to know there are people out there wishing you well. That might sound odd, but I have always found it a fun and welcoming place, no matter the snark.

So sorry OP but glad you went to the ER and they have a course of action and treatment for you. Best wishes for your recovery.

Yes, glad you went in - getting this figured out early is a real plus.

Advanced Mental Retardation (AMR). Sad last days...

So sorry OP, but now that you have a diagnosis in hand, you can hit the ground running. Best of luck with treatment.

The earlier they catch it, the more they can do about it OP. A brain tumor isn't an automatic death sentence anymore. I hope everything goes well

My next door neighbor has one and it's malignant. He told me they have finally diagnosed what kind it is and he is very lucky because they said it is somthine simple they can deal with it through Radiation, chemo and possibly no surgery. He is in g ood spirits and optimistic. To celebrate, he just bought a brand new Jaguar.

R30, I hope it is something that can easily be taken care of.

Damn OP this news sucks and I am sorry that you have to go through this but it’s nothing medicine can’t treat so stay strong and forge ahead. 🤗

OP here. I've been gathering more information today. A friend's husband is in the scientific research something or other (and has a medical degree) and another friend's father is a retired neurosurgeon. It's been immensely helpful speaking to both of them, as they have helped clarify much for me. However, I am now in the anger phase for one big reason. Six 1/2 years ago, I was diagnosed w/ colon cancer and had surgery and went through chemo. Every year thereafter, I got a PET scan (for the first four years) and then a CT scan, of my torso (chest to upper thigh). The theory being that if it comes back, colon cancer usually recurs in lungs or liver.

Of course, there have to be tests done, but both say that it's likely this is not a wholly new cancer and is a metastatis of the colon cancer. And I want to know why the fuck, if that was possible, they were not including my head in the yearly scan. FFS, I'm on the goddamn table already. Shove me through the fucking machine another 18 inches. I can't let that take over right now, but man, I did everything I was supposed to do when I first got cancer, and was diligent as hell and have stayed diligent for these 6 years and I'm really upset that something stupid like this (likely driven by insurance issues, even though I have good insurance) caused the cancer to come back.

AIDS

Damn OP. Yes, you did everything right. I am praying it pays off for you. Please keep us posted. We are all in this with you.

[quote] My next door neighbor has one and it's malignant. He told me they have finally diagnosed what kind it is and he is very lucky because they said it is somthine simple they can deal with it through Radiation, chemo and possibly no surgery. He is in g ood spirits and optimistic. To celebrate, he just bought a brand new Jaguar.

I'm happy to hear this. Thank you for sharing. My friend's dad said to ask about something called a gamma knife, which is a radiation treatment that is in lieu of surgery. He said he doesn't know for sure that that would be the way to go because he hasn't reviewed my scans, but said- if you mention it and your surgeon can't tell you exactly why it would not be the right way to go, find another surgeon. I've already also found another neurosurgeon I would like to see for a 2nd opinion before I make any decision.

[quote] It cost almost 6 grand.

Make a payment plan with the hospital and pay them $10 a month.

I was joking with my friend that if this was going to happen, why not six months earlier? When I had the colon cancer, it was early in the calendar year and I hit my max payout in March. For the next 8 months, everything was free. By October, I was looking to get a hysterectomy (even though I'm a guy) just because I wouldn't have to pay for it. But it's already September, so I'll only have maybe a month to get that nose job I've always wanted.

Medicine is all decision tree driven these days. What is the most likely diagnosis given the symptoms present? = treatment intervention. If that doesn't work, try the next most likely dx/treatment.

The same holds true for post cancer monitoring: where is the reoccurrence most likely to occur = scan those areas.

Yes, R48, I have also been told that, and I get it, up to a point. I don't know all of the justifications for how they decided to handle my post-care yet, but it seems like it would be not much more to scan me tip to toe rather than just the trunk. Or at least head to balls.

Sounds like recurrent migraines and only codeine would cure them. If you were in the UK you could stroll into a pharmacy and get a pack of 30 Solpadeine Max for $10 but I guess you will have to suffer.

Thanks for your expert opinion on brain tumor treatment R50.

Fuck off you spaz, R51. I didn't read the whole thread. Sounds like you're a dead man walking but I see you're going to milk it on this thread for months to come.

OP -

Thoughts and well wishes sent your way. If up to it, please keep us posted as to how you are getting on.

We care.❤️

[quote] Fuck off you spaz, [R51]. I didn't read the whole thread. Sounds like you're a dead man walking but I see you're going to milk it on this thread for months to come.

That actually wasn't me, R52. But given your response to it, I am firmly Team R51.

OP, do you have a fever?

[quote] I can't let that take over right now, but man, I did everything I was supposed to do when I first got cancer, and was diligent as hell and have stayed diligent for these 6 years and I'm really upset that something stupid like this (likely driven by insurance issues, even though I have good insurance) caused the cancer to come back.

Don’t be hard on yourself, or the circumstances, OP. If this is a metastatic lesion in the brain (from your colon), know that brain mets can be a bit of a wild card, so to speak, and liver/lung mets are much more common.

Regardless, brain mets can often be easier to treat than types of cerebral malignancy. Since there is a discrete tissue (of origin) difference in the lesion, they can be “separated” from the brain tissue rather than entwining around significant brain structures.

Obviously don’t know the specifics of your case but there are options, and I am holding fast to a smooth and positive outcome for you.

Hang in there and know that you/they have done everything by the book.

Thank you, R53. : )

Damn r52. Just damn.

Im not an MD, but I previously worked with cancer patients on clinical trials. Typically for a trial they do a brain scan at the beginning of the study then not again unless the doc feels its clinically necessary (i.e. usually that means symptoms). And even just doing the brain scan to begin with also depends on the clinical trial and type of cancer. They dont always look at the brain unless they think it might spread there.

Gamma knife is a new highly effective very targeted radiation. Think multiple tiny focused laser beams. I believe its most effective for brain mets and smaller tumours (up to a few cm in size). Definitely ask about it.

I know this place can be snarky and bitchy, but its also a nice community that has helped give a much needed laugh more times than I can count. I wish you lots of love and a speedy recovery 💚

R52 needs to be blocked by all of us, because he is just a complete shit. I hope nothing bad will happen to him, becauseh he will get the kind of symapthy hesends out into the world.

Agree, r60, and blocked r52.

Jesus, OP. I’m sorry for your troubles, but at least you have a diagnosis now. It’s been said already but please keep us informed, we only pretend to be heartless bitches and want you to get well soon.

[quote] It’s been said already but please keep us informed, we only pretend to be heartless bitches and want you to get well soon.

It's always appreciated to hear, so thank you.

I am ready to hit the ground running tomorrow morning. I found another surgeon who I want to make an appt with for a 2nd opinion, and I am locked in and focused. And yes, as long as people don't get sick of hearing about it, I'm happy to chime in with updates now and then (and of course carry on my snarkery in many other threads)!

OP ~ Please keep us posted ~ I hope that your week isn’t totally stressful and scary ~ sending you good positive thoughts!

Been a busy week of consultations. Met with two diff neurosurgeons, a radiation oncologist, and an ophthalmologist and I'm more confused than I was before. Everyone has a different opinion on how to approach removing the tumor and no one has said anything uniform other than it needs to come out (yeah, duh). So I am now meeting with a third neurosurgery team this week to ostensibly be the tie-breaker, and an ocular plastic surgeon. I'm exhausted, but I suppose the good thing is I'm far too busy to wallow.

One of the more fascinating (and amusing) bits of info about one of the surgeries I've gleaned is that they make the incision above your hairline and because they go up so high (to hide the scar) they have to pull up your skin. I didn't think much of that, but a friend of mine's father just had a craniotomy because he had a bad fall. So she was showing me photos of his surgery right after, and then how it's healed. And I said to her- How old is your dad? And she said he was 80. I told her- Holy shit, he looks fantastic. I would have pegged him at about 62. And she said- It's because he pretty much got a face lift with the surgery! So I suppose I have that to look forward to, though, truth be told, I don't really need one. If they're gonna help me out cosmetically, I'd rather they go in through my neck and lift that, since that's the only place on my face that could use a little sprucing (unless they can figure out how to permanently get my beard to stop growing in grey).

You may be very lucky! Time will tell, but since you are totally coherent and haven't been falling down, etc., you could be a lot worse off. Glioblastomas have poor prognoses, but some brain tumors are benign and potentially dangerous only because of how they create pressure. I've heard of a lot of people who've had brain tumors that were removed and they jaut went on with their lives with no or few ill effects.

I am really sorry about this, OP.

As I read your posts, I assumed something was compressing the nerve and my mind went to a tumor or a dental abscess. Both could be life threatening but both also can cause little harm if identified and removed before they cause harm.

I wish you the best of luck. Please keep us updated.

I hope someone is accompanying you to these doc apts, OP. Someone to take notes. Someone with whom you can review all the info later.

Do you have access to a fine medical center? Sometimes it's wise to pack up for Sloan Kettering, Anderson, Stanford, etc rather than stay local.

OP so sorry to hear what you're going through, but at least it's been identified and you're taking action.

DL can have havens of compassion here and there- the last one was with Brian Nash, who had tongue cancer. The first 3 threads seem to be gone, but I found the 4th, and you can see how genteel everyone was.

I remember those threads, R68. I chimed in now and then, as I had already tangled with cancer once.

Yes, I am in Los Angeles, so I have Cedars, UCLA and other hospitals, and I am interviewing with all of them before I make a decision.

A friend suggested that I maybe go to NYC for care, but having lived in NYC, I know how difficult it can be to navigate if you're ill, and with the added struggle of Covid (and not having a place to stay), I'd rather be at home. But yes, it is a good idea to make sure you feel good about the care available to you where you are. And one of my new issues with the tumor is persistent lightheadedness (not dizziness). I don't know how bad it will get, so not having to navigate stairs and being able to just jump into an Uber if I can't drive is probably the easiest for my condition. (I have friends who will drive me places, but I don't like to impose.)

OP you or someone you trust needs to research the doctors and the hospitals and the surgeries that are proposed. Check out success rates. Check out ratings especially the low ratings and criticisms. And most of all think really hard about the people you have met during your consults. Which ones do you feel most comfortable with? It's really important. Who was the most forthcoming. Who was the most realistic?

[quote] Which ones do you feel most comfortable with? It's really important. Who was the most forthcoming. Who was the most realistic?

Would second this, OP. If there are words that stick with me following my neurosurg training, one mentor’s words ring true: “You can teach a monkey to operate”. And while it IS brain surgery, it is nonetheless surgery. Short of a deficit (akin to the chairman of a neurosurg department [not in LA!] who was renown for his hand tremor), surgical techniques are not the end all be all. These techniques can be taught and vary based on preferences, background and patient presentation.

What cannot be imparted are qualities such as discernment, judgment, awareness, empathy and a fierce desire to be the patient’s best ally and aid throughout the process.

Whenever patients seem overwhelmed, I remind them to listen to their intuition and trust their judgment. If they find this difficult, spent some quiet time alone and “tune in” to the “inner landscape”. Whilst a surgeon is an ally, they DO NOT heal anyone’s body. Ultimately, the healing comes from within via each patient. I’ve seen over and over again that corporeal bodies wish/aim to return to their “natural states”.

Sounds as though you have options, OP, as to which way to proceed. Trust that things will become clearer as things unfold, and you will instinctively know which path to take which will be the ideal one for you.

[quote]I learned the hard way recently with a foot issue. Three doctors later I finally have an answer.

But do you still have a foot?

God Bless Us everyone!

Op, I'm in West Hollywood...should you ever need a ride anywhere, I would be most happy to try to help you out if I can.

Thank you R70 & R71 and I agree completely. The good news (if that's the correct phrase to use in this case) is that I have had cancer before, and so I have gone through the vetting process and researching and all of that and am employing the exact same strategy here. But it's a great piece of advice and to hear it from others helps me to feel like I'm not being "hypochondriacal" so I appreciate it.

The last time (which was colon) the surgery was very straightforward and the three surgeons I interviewed all were planning on taking the exact same route, so to speak. So it was a decision of who I felt most confident in. I crossed off one guy immediately because I thought he was a terrible doctor (and his reviews actually backed that up). I was going to go with the Cedars surgeon because I thought his bedside manner was a good as his skill. However he did not take my insurance. He actually said to me- don't let that deter you. I will only charge you what you would pay if I was in your network. But his office staff was so inept that I didn't trust it. I had visions of having the surgery and then wrangling with them over a $50K bill. So I chose the UCLA surgeon who was the head of that dept. Great surgeon, no so great bedside manner, but I needed him to cut out my cancer, not entertain me for tea.

These three surgeons I'm having a little more trouble getting reviews on, so I'll have to do a bit more digging.

I appreciate everyone's indulgence in listening on here. I don't really have any family now. (My mom died a couple years after my first cancer.) And while I have friends who are lovely, I also know that I have to be judicious in just how much I lean on them or bother them.

[quote] Op, I'm in West Hollywood...should you ever need a ride anywhere, I would be most happy to try to help you out if I can.

That is just about one of the nicest things I've ever seen on here, and I really appreciate it. Thank you for even putting that out there.

OP, will you go before a tumor board?

Only if I have an accompanist in my key.

OP, know that myself and others are rooting for you. Thank you for keeping us posted. Love and light to you and hoping your treatment brings some comfort.

Why are you prevaricating while the tumour grows?

Things went downhill pretty quickly and I wound up having surgery on Tuesday afternoon with the third surgeon I interviewed (and whom I was planning on choosing after meeting with him). They have already sent me home and I am meeting again with them in a week once the pathology is back so we can discuss the plan forward. Radiation is definitely in the cards, but not sure what else. Just by the look of it they think it's metastatic from my older colon cancer (which isn't impossible, but the odds were sure high). They were not able to remove the entire tumor because of the proximity.

I have to say that, for someone who just had a craniotomy, I feel surprisingly not terrible. A little headache pain, some jaw pain, and I packed on 7 pounds of fluid while I was there and have begun peeing it out in earnest all morning. (It had to be fluid because I've either fasted or barely eaten in the past three days and should have lost a few pounds.)

I'm scared. I just have a feeling the prognosis is not going to be good. I don't want to doom things, of course, but you know those deep gut feelings are seldom wrong. I'm trying to just not think about it. And I'm glad I have a week of time before I know for sure.

OP I don’t have anything to offer but sending positive vibes to you.

[quote]I just have a feeling the prognosis is not going to be good. I don't want to doom things, of course, but you know those deep gut feelings are seldom wrong

Personally, when it comes to medical ailments, I've found that deep gut feelings are seldom right.

I'm glad you're home and feeling okay and I'm going to think positive on your behalf!

My best friend (female, age 73) had a sudden seizure out of nowhere last July. She was diagnosed with a malignant glioblastoma shortly thereafter. I thought she would live to see Christmas, however, after surgery, oral chemo (which she took at home, no infusions needed) and daily radiation for one month, she beat it. She just had an MRI last week that showed no evidence of cancer ANYWHERE. She will be going for scans every 3 months for the forseeable future, which is good.

Whoever said upthread that cancer treatment is not what is used to be is exactly right. Keep hope alive, OP - best wishes to you.

**correction** "wouldn't live to see Christmas" -

Thank you, R84. That's an amazing story. Tell your friend I wish her well and am thrilled she's doing so well. : )

Thank you, I will. During her surgery they were not able to get all of the tumor either due to proximity issues, and in fact the surgery revealed another tiny one growing in another spot that they were able to get. Radiation and chemo clearly did the trick getting it all.

She has been in recovery for over 25 years, and one thing she told me she did I found very uplifting: every day, when she took her oral chemo, she would hold the pill in her hand for a few seconds, and tell herself, "This pill is MY FRIEND and it is going to HELP ME." Like a mantra, I guess. It worked for her - hopefully your path will be equally successful.

Glad you survived the surgery, and that they were able to remove most of the tumor. Now, it's just a matter of knocking out the rest of it.

Take some Tylenol

I’m busy addressing visible signs of aging.

You sound good for such recent head surgery, OP.

I went through something similar last year when it looked like testicular cancer had spread to my abdomen.

I decided to not be scared. It was ruining my days. I hope you can find a way to do this as well OP as you move through your treatment. You're going to meet some very nice people during this experience.

Nasal worms

OP here's what I know about "gut feelings." Most of the time, in a crisis, those gut feelings are the sum total of fears and anxieties we have. it's also the way our subconscious and our emotional self "prepares for the worst." even if the worst outcome is in doubt. I'm praying for you. ANd yes, from a fatalist's point of view, things coulld go very badly. But there's a strong possibility that things may work out well. So hang in there, and try to banish your anxieties by just taking it a day at a time. Sorry for all the cliches, but I don't know how to say it any better.

Thank you for the update.

We are here for you.

No one knows how it'll go, either the prognosis or the outcome. So just breathe through it.

I think I mentioned it above but in case I didn't, a friend's mother was diagnosed with stage four lung cancer laat fall, not due to smoking. The prognosis for stage four lung cancer is bleak. She had an experimental gene therapy and a year later, the tumor has disappeared.

Her diagnosis followed trouble catching her breath, which was her only symptom. She is off oxygen now and breathing fine.

The doctors told her that the expected prognosis from this point is that she will be totally well until she is not, and at that time, she will probably have rapidly growing stage-four cancer and not live long once it is discovered. They don't know why, but that's how this treatment's effects seem to go. But it's still experimental and they don't know for sure how it will work out.

You don't know, so don't torment yourself assuming the worst. If you did only have a short amount of time left, you wouldn't want to spend it panicking. What a horrible feeling.

Last thing: I read years ago that most people—not even just people with anxiety disorders but most people—assume worst-case outcomes and spend a majority of our time worrying about them. And only in a very small percentage, single digits, of cases does the worst-case scenario happen. And when the worst does happen, it's often sudden and unanticipated. So again, it's not reasonable to assume the worst. So as not to take up too much space in this post, I will post a short story about my parents below.

My mom lost weight for YEARS due to chronic diarrhea. No doctor was concerned. My parents were. She was emaciated and in terrible pain. Doctors would not admit her to the hospital for lab work. She eventually was so weak, she fell in the bathroom and was knocked almost unconscious when she hit her head on the toilet. My dad was lectured by the ICU charge doctor for letting my mon become so malnourished. She was in the hospital from early December through the first week of January. Every other day, she had a great prognosis. She was declared "actively dying" the first week of January and came home and finally died a week later. She was 66.

My dad always expected she would outlive him by decades because of his family history. He spent his entire adult life saving and preparing for her to be taken care of after he died. Every man in his family has died before or around age 60.

He's 74 now. While my mom was still with us, he was diagnosed with an abdominal aortic aneuerysm and he had a minimally invasive surgery that corrected it. Uncorrected, it's something like a 98% chance of death if it ruptures.

The year after my mom died, they told my dad he would need the invasive surgery. It was very high risk. I took a week off work and went to his house to be with him. The night before the surgery, his surgeon called at 9pm and said "I have a bad feeling about the surgery. Can I cancel it?" My dad was baffled and we agreed. (He wanted my opinion.) We thought no surgeon in that state of mind should perform surgery. His surgeon met with a doctor on the west coast. They came up with an experimental alternative surgery that was much less invasive. It worked. His aneurysm is gone.

The surgery he was scheduled for has a 50% survival rate. The doctor said he would have to sacrifice a kidney for sure, he may lose part of his lung function, and there was some chance of partial or full paralysis below the waist.

Now my dad is absolutely gobsmacked he was going to have that done and said now he would choose not to if they told him he had to to save his life, and I understand why. I wouldn't either.

Why am I writing all this?

Many doctors are wrong a lot. People die because of it. My mother did.

Many doctors are both wrong and right. Some are bold enough to acknowledge they can be wrong and recalibrate. My father is alive because of it.

Some conventional medical knowledge and processes fail and some alternatives really work.

Get out of the most likely prognosis way of thinking and cheer yourself on. We are all cheering you on.

Goodness, R95 - what a grim story. Did your mother have undiagnosed bowel cancer? Glad your dad made it.

R96 No. All those years, they kept telling her she had irritable bowel syndrome. "Go home and take Immodium."

In the end—at the very end—they said it was Crohn's disease.

Can you take your self-absorbed family diarrhea tales outside? This thread is meant to support OP.

OP here, and this thread is open to anyone who wants to share any stories that they like if they are on topic or thought to be helpful. (Not that I or anyone else can stop anybody from posting whatever they like, but I'll flex for attention.) : )

I'm up at 4am because it is not comfortable lying down right now. I just took some Advil and hopefully I'll head back to sleep in a few hours. I was investigating my surgery reports and discharge notices and all that online earlier and was rather surprised at some of the things that I have yet to be told. Maybe they figured I would be naturally curious. I don't know.

They put a mesh patch in instead of the small piece of skull they took out, apparently because the skull was too thin due to the invasion of the tumor. I know need to know what that means for long term. Do those things last forever? Am I going to set off every metal detector? Can I have tests? (I guess I must be able to- they gave me a post-surgery MRI in the hospital.)

Also found out they tested part of the tumor already and know it's metastatic. Why the dog and pony show about needing to wait a week? I was also supposed to have a PET scan later today, but my insurance turned it down because I had a CT of the torso in the ER 2 weeks ago and they don't think I need a PET scan, so that was canceled I need my surgeon's office to call my insurance and hopefully get that overturned, especially now that we know it's metastatic. The CT was clear, but CTs suck in comparison to PET scans.

I just want to sleep comfortably again. I haven't had a restful night's sleep in what feels like forever, though I know this has all only been going on for a few weeks since the symptoms started.

The one bright side- I peed out all that fluid (naturally- no diuretic). I lost 10.5 lbs since yesterday. I knew it was going to be something crazy. At one point I was getting up every 30 minutes for a full pee.

Thanks for all the support. I very much appreciate it. I'm trying to stay positive. I'm also very impatient and I want to fix things immediately when they break or solve a problem right away. So this is double hell for me.

No one else on here is going to care, I'm sure, but I just find it odd that in the middle of all this brain tumor stuff, you were able to absolutely flood the board with anti-trans posts where you called anyone who disagreed with you an "unhinged tranny" as you bragged about reporting a whole bunch of trans on Twitter, trying to get their accounts suspended.

If you're for real, may I suggest you not spend your final days online, screaming about the evil tranny menace?

[Quote]They put a mesh patch in instead of the small piece of skull they took out, apparently because the skull was too thin due to the invasion of the tumor. I know need to know what that means for long term. Do those things last forever?

OP, I had the very same mesh patch attached to my skull after a head injury when I was just a boy. That was decades ago and no problems. The mesh as opposed to a solid piece is meant to allow the skull to grow through it over time. It becomes integrated into the skull.

No, there will be no issues with metal detectors, etc. This is your new hardware, broh.

Thanks, R101.

[quote] No one else on here is going to care, I'm sure, but I just find it odd that in the middle of all this brain tumor stuff, you were able to absolutely flood the board with anti-trans posts where you called anyone who disagreed with you an "unhinged tranny" as you bragged about reporting a whole bunch of trans on Twitter, trying to get their accounts suspended.

I think you're looking to twist things, because you've exaggerated (and in some places flat out lied) about everything you just said. And since this doesn't belong here in the thread, whatever your motivation (and I can't even imagine), now you're also blocked. I may not be able to control what's posted, but I sure don't need to see this.

So good news, you don't have to waste your time ruining the thread because I can't see your posts anymore. (And since I know how to block and ID like everyone else on here, I can tell you have a few sock accounts.) Please go spend that time more productively.

[quote]I think you're looking to twist things, because you've exaggerated (and in some places flat out lied) about everything you just said.

The posts I was referring to were on the "Gay rights activist Fred Sargeant assaulted" thread.

[quote]since I know how to block and ID like everyone else on here, I can tell you have a few sock accounts

There's no way to "block and ID and tell you have sockpuppet accounts."

I won't be posting again on this thread, and I really hope for the sake of the real people on here who have shared their stories that you're not trolling.

Wow, R100/R104. Just stop. You're being inappropriate and you seem very cold-hearted.

Sorry you've been up all night. I don't know whether the mesh metal screen will set off alarms, but that's a good question to ask the doctor or the manufacturer. First get your health in order and then worry about traveling. :) If the metal does interfere with security scans, that's not a problem. You'll just declare that and they will pat you down instead, no problemo.

I'm the one who told the long health stories about my mom and dad. I didn't mean to distract from your life's story; I just wanted to offer some examples of how unpreditable medical diagnosis and care can be for the sake of saying don't go by standards you are reading about. There are common ways of things happening and there are exceptions and in my experience, exceptions have been closer to the rule than not.

Speaking of examples, one more from my family—this one SHORT. My uncle had a brain aneurysm 15ish years ago. He "should have" died. Very low survival rate. He survived and he is fine, except that he is getting old and old age takes a toll. His brain is fine, anyway. I believe there may be some device implanted in his brain. If there is, it doesn't affect travel at all. He and my aunt are always on the go, driving around the US in a camper and traveling to Europe, Mexico, Hawaii, Alaska.

[Quote]I don't know whether the mesh metal screen will set off alarms

How would you? You don't have one. Maybe read r101.

First time I've seen this thread. Sending you (OP) positive thoughts and wishes. You are being very strong and brave. I'm watching the thread to see your updates. God bless.

[quote] I'm the one who told the long health stories about my mom and dad. I didn't mean to distract from your life's story; I just wanted to offer some examples of how unpreditable medical diagnosis and care can be for the sake of saying don't go by standards you are reading about. There are common ways of things happening and there are exceptions and in my experience, exceptions have been closer to the rule than not.

You did not distract at all and I appreciated your time and effort. If I gave you the impression I was upset with you, it was not intended and I apologize.

OP , I'm not sure if this was said before , but since this is DL after all... can I have your stuff?

OP? I don't know if you mentioned your age, but I just turned 64, and if there's one thing I know for sure, you have to do the things you want to do while you're still healthy enough to do them. So here's hoping you have the healthy time and the financial means to do all the things you've always dreamed of doing.

Good luck, and know I'm thinking of you and hoping for the best.

I am 54, R111, (but I do actually look 42, however, I'm not sure how much longer that's gonna last). I don't have any superficial kinds of things I'd like to get done before whatever happens happens, but I do have other goals, some of which I am in the middle of and close to finishing. And I am terrified that I won't get there.

Today is not a good mental health day for me. I am trying to find a therapist who has experience in dealing with cancer patients, because I cannot continue to burden the friends I have with anxiety calls. I won't do it. I won't even do it to strangers on here. But I will happily pay someone to listen to me, so the hunt is on.

[quote] OP , I'm not sure if this was said before , but since this is DL after all... can I have your stuff?

Honey, I got a lot of shit. And there may come a time where I throw out an offer- if you come and box it up, you can take it home.

(((((OP))))) Love you, OP! You are not a burden.

Yes, OP, as another poster stated, the mesh acts as a foundation for new bone growth: a bit like laying down a grid. It is strong, but will incorporate into new skull. Titanium is usually used, and there are literally millions walking around with titanium plates, screws, meshes, etc. in their bodies as a result of broken bones, surgery, etc. (should be no problem traveling or getting scans. And the mesh will be part of your medical history, so scanners/medtechs should be aware.)

The PET scan is a good idea and your surgeon will likely bypass any insurance issues.

You likely received standard corticosteroids prior to cranial surgery to prevent brain swelling from any surgical trauma. Hence the fluid retention that you are now releasing via urine.

Your brief hospital stay following your craniotomy is encouraging: sounds as if there were no complications and pain that was not too severe.

Regarding the pathology, if you are confident that it is metastatic disease, your surgeon may liaise with your prior physicians to determine the next steps. If there remain residual aspects, again options are on the table: radiotherapy/targeted immunotherapy/gamma knife/etc.

This will depend on the pathology (type of cells) and degree of differentiation of the cells found on the path report.

Again, usually, met disease is a bit easier to treat than primary brain cancers such as GBMs. Although this is not a hard and fast rule. New drugs are developing and as another poster noted, folks can do very well with newer treatments. (Appreciate that the poster reported that their friend, the patient, noted that her medicine was her “FRIEND”. Very wise.)

During this critical time, attitude and overall body wellness will enhance outcomes. Don’t know if you are open to things like visualization or meditation, but we are seeing more and more the impact of non-physical aspects on the corporeal system (e.g. recent study showing how this can be as effective as BP meds for the treatment of hypertension.)

Having someone to talk to is helpful: whether a therapist, friend(s) or here on the board. This is a heady (no pun intended) time for you and most people would be open, understanding and compassionate to all you are experiencing.

Well wishes your way....

Thank you, R115. I am trying very hard to not fall apart today, and your message was very encouraging. I wish that I could pull it together better right now, because I've been sitting in this chair since about 3:30am and I can't seem to focus on anything else. This kind of news is a paralyzer and I might be paralyzed for a few days until I figure out how to move past. I might need to just hunker down with every old television show I've ever wanted to watch or re-watch and just zone out until I can get some more answers.

I have reached out to wellness center attached to the hospital where I had my surgery and I am hoping they will be able to refer me to a therapist

OP I don't even know if it is appropriate under the circumstances, but I do think anxiety is exacerbated by a lack of sleep. You mentioned earlier that you haven't slept. Is there something they can give you to deal with it. Shit. You have been through a lot. Of course you're feeling paralyzed. I can't even imagine dealing with all you have been through. You have a long harrowing road , and as cliche'd as this is, the only way out, is through, After spending time with you on this board, I'm convinced you will get through this. it's overwhelming and you are right to just take some time and let it all wash over you. A therapist is a good idea.

I have xanax to relax me, R117. The big issue is that my head hurts most when I'm horizontal. I did nap a couple of hours in the recliner and may do so later this afternoon.

Thinking of you, OP!

OP people survive for years with brain mets, they’re not like primary brain cancer (glioblastomas.) Sometimes they stay stable and don’t grow, or don’t recur after being removed. There’s always gamma knife for whatever part they couldn’t surgically resect.

I have a feeling you’ll be fine and around for years to come.

[quote] Thank you, [R115]. I am trying very hard to not fall apart today, and your message was very encouraging. I wish that I could pull it together better right now, because I've been sitting in this chair since about 3:30am and I can't seem to focus on anything else. This kind of news is a paralyzer and I might be paralyzed for a few days until I figure out how to move past. I might need to just hunker down with every old television show I've ever wanted to watch or re-watch and just zone out until I can get some more answers.

If in the middle of overwhelming thoughts about all that has transpired, distraction (via television) may be an effective antidote. It is recommended that you tell yourself you can think/worry about the circumstances another time. Meanwhile, try redirecting focus on things that pull away from anxiety-provoking mentations. If your thoughts turn again to worry, imagine the best possible outcome to your situation. Don’t worry about how or when this will occur....just trust the situation will resolve to your greatest satisfaction and then turn your attention away from the scary thoughts to distraction via tv, music, rest/sleep, etc.

This may provide some “breathing space” and allow for some bodily relaxation. The in between time (before surgery/before final pathology results/before obtaining therapy) can be notoriously stressful to navigate.

Anything you can do to ease your mind and relax your body can aid in the healing process and make this uncomfortable period less challenging. All things considered, you are doing well (otherwise you’d still be in the neurosurgical ICU), and an inordinate amount of patience is necessary to pass through this awkward period now.

Be patient with yourself, and even if you fear otherwise, TRUST that things will work toward your benefit.

Talk to us more here on the board if you find it helpful. Many of us here care and are supportive. We want you to have the best possible outcome.

OP, re a therapist - are you being treated in a big cancer center? They usually have social workers affiliated with the program who either provide counseling themselves or can refer you to a therapist experienced in working with people with cancer. As a mentally competent adult with (I assume) no major financial barriers to your treatment, you probably have to ask to see a SW, as a referral would not be automatic if there was no indication.

Also, as needed, keep reminding your docs that you're single and have no one to look after you at home (if that's true). Many docs assume that "everyone" has family around to take care of them unless told point-blank "I'm alone in the world". They really don't want to get involved in patients' home lives, but that's what the social workers in a big cancer program are for - to guide you to services you may be eligible for, including MH.

Head / neck things are v complex. I had sinus / throat issues for years that eventually turned out to be caused by a combo of quite benign things (reflux and an internal bacterial infection in my tonsils) that were referring the issue to other parts of my upper respiratory system. Not saying that’s what you have but seems to be quite often that you’ll get inflammation in areas where the issue is nearby but not quite in that location….if that makes sense.

Damn, R123 -- read the thread!

Thank you all. Regarding a therapist- yes, I most definitely want to start seeing one. I'd been seeing one recently before all of this began, but it had not been for that long, and I also know he's not equipped to "specialize" in this sort of thing. I started doing some research yesterday for therapists with experience treating cancer patients and found an outreach program tied to the hospital where I had my surgery and spoke to a very nice woman who is going to get me some referrals.

But a story- 6 years ago, when I got colon cancer, mid-way through chemo I was having a lot of issues with my oncologist (much too long of a story) and I decided to do this very same thing, find a therapist who had experience w/ cancer patients. I found someone online, sent a query email, explained the situation, and he said, "Not only do I have experience treating cancer patients, I am being treated for lung cancer myself." I went to a few sessions and realized they were five minutes about me and the other 45 minutes about him. But it was good to talk to someone. Then the cancellations started happening. And then I never heard from him again. I found out a couple months later just by doing an online search that he'd died. (I had a feeling it was something like that.)

So, of course, this time around, only healthy therapists.

Yesterday was a super down day, but I feel a little better today and I will take it. I also had a semi-decent night's sleep, which really helped. I am going to try to walk a bit today on the treadmill. Nothing hardcore, just as if I was going for a walk outside.

Chronic Fatigue Syndrome

0/10

R124 lol I did skip most of it.

Thinking of you, OP. Wondering how your week has been so far.

Have you had your eyes checked? You could have uveitis, which can cause pain above and below the eye. Feels like a migraine and sinus issues. Eye pressure could also cause radiating nerve pain.

R130....go back to sleep.

Hi R129. Week has been okay so far. Not much pain and I've tried to stay calm. The good news is that I was able to appeal my PET scan to my insurance company on my own and get the decision overturned. I cannot believe I made that happen without a doctor intervening. They initially rejected it because I had a CT scan in the hospital 2 weeks prior to my surgery and my oncologist's office did not tell them that things had changed radically since the initial request.

So I am booked for that first thing Fri morning. And I will be meeting with my surgeon tomorrow to go over the full pathology of what they removed. Though the initial test they did in the hospital during surgery revealed it was metastatic, so I'm prepared for bad already. I'm hoping it won't be worse.

I shall let you know what they tell me. Fingers crossed and all that. Thank you for asking.

Thanks for the update. Great getting that PET scan decision overturned!

Will be on full positive vibe beam for you tomorrow and Friday.

Big hug to you, and hopefully some good sleep.

Keep on posting, OP -- we're rooting for you!

After reading OP's post at R132, I got angry. I remembered when President Obama talked about his mother in her hospital bed, ill with Cancer, and arguing with her insurance company, and here is someone who is ill with cancer and he has to personally appeal to his insurance company to get what he needs. The healthcare system in this country has not changed very much in all the years since Obama had to watch his mother. I hate the way these fuckers will mess with us when we are at our most vulnerable. I pisses me off. Sorry OP. I am glad you were successful and I want to echo R133. Take care.

R135 Earlier this year, my immunologist told me a monthly monoclonal antibody treatment may be a 'magic bullet' treatment for me. Its retail price is crazy expensive—close to what chemotherapy costs—but with insurance, it isn't. The doctor said his office would get it approved, but it would be a fight and take a while. We made an appointment two months later for the first shots. It had to be delayed twice because the insurance company kept inventing new requirements, and ultimately it took a bit over three months for the approval to go through. But the doctor had been through it before. He told me that his staff would probably end up spending 40-60 hours in total fighting with my insurance. He didn't bill for any of that time.

Not to be flip, but have you been tested for an STD? This sounds like a syphillis infection

Wow, R136, that is definitely a keeper of a doctor. So glad they got it settled!

Yeah, R138, I am very grateful for this doctor.

The crazy thing with the medication and the insurance is that the drug, an injectable monoclonal antibody, is approved to treat three conditions: chronic idiopathic urticaria (recurring hives of unknown cause), asthma that doesn't respond to regular inhalers, and nasal polyps.

Two of these are among the many semi-disabling *symptoms* of my illness, mast cell activation syndrome. They're not the worst of my symptoms by far. The drug is not approved to treat my underlying illness that causes the symptoms, but it is approved to treat two of the symptoms. And yet it does work to treat the illness itself and the many other symptoms it causes. I find that to be crazy.

It's like if a cancer caused a rash and a cure for the cancer were available, but insurance only approved prescribing the drug for a rash and not for cancer.

[quote] The crazy thing with the medication and the insurance is that the drug, an injectable monoclonal antibody, is approved to treat three conditions: chronic idiopathic urticaria (recurring hives of unknown cause), asthma that doesn't respond to regular inhalers, and nasal polyps.

OMG- were you on Zolair? When I had my first tangle w/ cancer and chemo, about 2 months or so after I finished I woke up one morning and I noticed I had hives on my torso. They weren't terribly itchy, but they looked like bug bites and I thought- oh man, did I get bedbugs? Then a few days later I was getting ready for work and I noticed my upper lip was a little swollen on one side. As the morning progressed, it got worse and worse and started to spread. I wound up leaving to go to urgent care, where they gave me a shot of Benadryl, which took care of the lip, but not the hives.

Turned out that my immune system had gotten repressed during chemo (no surprise) but had suddenly come roaring back and was now in overdrive. I had to go on a year-long monthly injection therapy called Zolair. I would go to my allergist's office, get an injection in the back of each upper arm and wait there for 90 minutes to make sure I didn't have a reaction.

The meds were super expensive, but I don't know how or why (if the drug was new, etc.) I was given some coupon by the manufacturer that gave me a discount for 1-2 years use and it only cost me $5 per dose plus the office visit). And I have decent insurance.

R140 Yes, I take Xolair. It has helped a lot, particularly with heat and exercise allergies that cause anaphylaxis.

And yes, same setup. Insurance covers a portion of it, and the remaining portion is covered by the drug company's supplemental program.

My condition, MCAS, has really only been well described over the past decade or so. It's considered rare, but more and more people are being diagnosed with it. It can be disabling.

The symptoms are severe allergic symptoms, primarily anaphylaxis, which can be life threatening if the airway swells up or if blood vessels swell up, making blood pressure suddenly drop. That latter of these is what happens to me when I overheat from exercise or being outside too long on a very hot day, or when I take any NSAID, and sometimes when I drink alcohol (but weirdly not always). There have been cases of the sudden blood pressure drop causing cardiac arrest and killing people.

Despite all the symptoms being allergic, it's considered an immunological disease. Despite being due to an overactive immune system, it's not considered an autoimmune disease. It's sort of in a class of its own, and there are no specialists to treat it. Instead, random immunologists, hematologists, oncologists and some allergists have taken an interest and have become quasi-specialists. It's very weird.

I am certain I acquired it following a long-undiagnosed Lyme infection because I did not have any of the symptoms before I had Lyme. The Lyme was eventually diagnosed and treated and all my nerve and joint problems went away, but I am stuck with this fucked up immune system that makes me dangeroisly allergic to heat, exercise, aspirin and ibuprofen and other random things. It affects my life tremendously. My job had an outdoor all-day retreat in August in Virginia, and no one gave a shit at all that I am allergic to heat—because, I realize, it sounds insane. I begged for them to schedule it during a cooler month, any month but July or August, and they did the first week in August. I can't work out anymore without nearly losing consciousness. Blah. And this disease is being disgnosed more and more often as more doctors come to understand it. It probably will not be considered rare within the next decade, and it looks like COVID may trigger it in some people, as well. Fucked up, all of it. My doctor thinks Xolair will be approved to treat it, not just its symptoms, within the next few years.

Wow, thanks for sharing that, R141. (And of course I forgot it was an X and not a Z because it's been about 5 years since I've been off of it.)

I just looked up MCAS. I have heard of it, but was not familiar with the symptoms, issues, etc. surrounding it. I'm sure people think you're imagining things when you tell them you have "allergies" to certain materials. I actually went through something similar many years before my time with Xolair.

I moved from NYC to LA in the early aughts, and about 3 1/2 years after being here, I started having symptoms of what I thought was bronchitis. Itchy airways, coughing, blocked passageways, and they would be triggered by things I had never had an issue with, most specifically wood. I had to sleep on my couch for nearly a year because I became allergic to my sleigh bed frame. I was also badly triggered by any scents. I started to feel like Julianne Moore in Safe.

Went to a ton of doctors, got misdiagnosed, put on several different drugs, told I was making it all up... this went on for more than a year, and I nearly had a nervous breakdown because I knew something was wrong, but no one could figure it out.

One evening I was in class and I was talking with my teacher and I mentioned this and she said- I know exactly what's wrong with you because the same thing happened to me, and I'm going to tell you who to see. She sent me to her ENT who diagnosed me as having an allergy to the small particle pollution in the air out here, and put me on a series of allergy shots for a year (but not Xolair) and slowly but surely, my immune system calmed down. It took a while, and I still have to be careful of scents, but I can actually be around wood again.

How are you doing with the Xolair? Has it helped? Are you able to do more with it?

Well done winning your appeal! Good luck for Friday - let us know how it goes.

R142 Thanks. I don't want to hijack your thread. The Xolair seems to be helping. It's not an allergy shot...it works differently and my allergist-immunologist office makes me sign in on a different clipboard than the allergy shot people use. 🤷🏻‍♂️ My poor condition doesn't have a home. 😤

I take four antihistamines (Allegra, Xyzal, famotidine and hydrozyzine) and an antileukotriene medicine (Singulair) daily, and those do a good job of controlling my symptoms day to day. I have occasional flare-ups/attacks, and certain things, like aerobic exercise that heats me up and an iodine CT scan contrasting agents, continue to cause anaphylactic attacks.

Xolair has improved that. My doctor cut back two of my antihistamines about six months into the Xolair and I had exercise-induced anaphylaxis again multiple times so I am back on all the drugs now.

As I mentioned, Xolair is approved specifically to prevent hives and I haven't had hives since I began taking it.

Hives outbreaks just come and go and so they never really bothered me much, but it turns out they are a symptom of anaphylaxis, and when I'm breaking out in hives on the outside, something similar is happening inside on all the outer 'skin' of my sinuses, respiratory and digestive tracts and organs, and it can cause sudden cardiac arrest, diarrhea, throat constriction, etc.

I found out in 2020 that I have two small aneurysms in arteries stemming directly from my heart. Cause unknown but I suspect it's from the constant inflammatory cycles weakening the blood vessels' walls and making them dilate over time. It's a mess. I hope researchers are tracking development of these types of major coincidental issues, including issues potentially like yours, to determine over time if there may be any correlation.

You're not hijacking at all. I'm very interested. I appreciate you sharing.

The things I've learned here on DL! Thanks all for sharing. Seriously.

Between you OP and Joe, DL has its sharp bitter edges blunted.

Got back a short time ago from the PET scan. Won't have results til next week, but all my appts are set. I met with my surgeon yesterday for a post-op and was hoping to get some more information, but all he did was leave me with more questions he couldn't (or wouldn't) answer, so that was very frustrating, as I would really like to know what I'm facing.

He also seemed to be annoyed that I was not using their practice's oncology team, but I have my own. I have an oncologist who has been treating for for a few years as maintenance from the previous cancer and I've already met with their radiation oncologist pre-surgery who I liked. Plus, they are 10 min away from my house as opposed to 45 min each way for this place. I'll have to have 30 radiation treatments. I can't deal with traveling that far every day. I told them the first day I met with them that I had an oncological team in place, so it wasn't like I misled them.

So I need to meet with both oncologists next Friday to go over the best treatment options. I already know the radiation protocol, but we need to figure out any additional chemo or immunotherapy. Gonna try to put it out of my mind for a week, and as always, stay on top of things.

Sounds like you're in control. Good luck, OP.

Glad you are giving yourself a mental break from all of this. One question, would you like to be called by your name/nickname? If so, what would that be? Or are you happy with simply being OP?

Sending restful thoughts your way.

OP is just fine, thank you. : )

R33, Best of luck and health to you. 🤗

I agree wholeheartedly with your words about DL.

Still alive and kicking? Still breathing?

Sending you lots of love vibrations, OP!

OP, this is actually great to hear. The surgery went well, youre still here, and they got most of the tumor out. Now you can focus on the chemo+rads for the rest. Try to stay positive and look at how you caught this on time and youre dealing with it. Sending you positive vibes.

R152 Here. Not to hijack this thread, but after years of caution and masks, tonight I went to Urgent Care and tested positive for Covid-19. Wish me luck, boys!

Presenting hole in a drafty room can cause sinus issues.

I'm sorry to hear, R156. Get well soon!

Hi OP, I know you were taking a little break from all of this, just checking in and letting you know the good vibes are still being beamed your way.

Thank you, OP/r158! I eschewed taking Paxlovid, as it is only in capsule form (Oh, Mary, don't ask), but tonight, Day 14, I seem much better breathing-wise, no cough, and never a fever.

I do, however, have the fear of God put back in me again, though! No "Fall fests" for me, or concerts, stores, etc. I'll go leaf-peeping this weekend, but staying mostly in my car! Masking is back!

I wish masking was back for everyone! And I wish that, after three years, they finally learned that if you're not going to cover your nose, why bother? I am glad you're feeling better, R156!

Updates with me.... Let's see, I got the results of my PET back. There are about a half dozen small "hot spots" that they think may be cancer, some on my mid spine, pelvis, femur, shoulder, and some lymph nodes in my abdomen/pelvis area. When they told me that, I got very upset. I asked my oncologist how much time he thought I had- point blank I asked if I had months or a year, just tell me straight. He feels confident they can take care of it so that I should have years. For now, that's the best I can ask for, I suppose.

My radiation oncologist will be starting me on radiation in early November. This week I go for yet another MRI, plus a digital head cast to fit me for the radiation. They are starting with the head radiation, then will move to radiation on the bone spots, then at the beginning of the year, we will move into chemo/immunotherapy. For now, it's more tests and even more tests.

I was at the reg oncologist today and he kept me waiting for more than 90 min. Not only was I stressed out about the news I might receive, but I was also parked on the street and only had 2 hours in the meter. I got a little huffy, but was able to refill it, and I calmed down. I think it really was that I was waiting for potentially bad news, and to keep me waiting even longer was stressing me out to no end.

I'm still on the hunt for a one-on-one therapist who specializes in cancer patients, but in the meantime, I was told about this potentially wonderful organization here in LA that has group sessions, mindfulness classes, yoga, nutrition, etc. Even people to help you navigate insurance and financial issues. I signed up and I feel like this will help me quite a bit with things that I had no help with last time.

Thank you all for your continued good wishes and support. I really appreciate it, and it's nice to hear people care. Not that I don't have anyone, but I'm somewhat alone. I have no family (other than extended who are across the country) and most of my friends are in NYC. But I do have a handful of good friends here. I'd love to get a cat, but I worry about being able to take care of him.

OP/r161, You are a trouper for sure! I so admire your ability to navigate all your appointments, treatments, and news on your own with such fortitude!

Know you have me and many others here, this motley crew, hoping and rooting for you! 🙏

For fuck's sake OP, I dropped my phone when I read your diagnosis. You sound sharp though, good for you. The group you just mentioned sounds excellent and helpful. Rooting for you Mr. OP!

OP - Thank you so much for your update. Was thinking of you yesterday and wondering how you were getting on.

Bit of a sync with R163 as I, too, had to regrasp my phone whilst reading about the PET Scan results. Bit of a mind bender, and I believe you to be courageous by addressing your oncologist head on with the prognosis question.

What IS encouraging is that your oncologist feels confident that the PET results can be addressed. Been around the medical world enough to know that what you have must be eminently treatable, or your oncology physician would state otherwise.

In the meantime, you appear to be staying on top of things and while you continue to search for your cancer therapist, the group you describe sounds like a great option.

Know that you are supported here by invisibles in the ether sphere, and we are sending great vibes and very well wishes TO YOU.

OP metastatic isn’t what it used to be. With modern treatments, people can live for years, and live well. I’m glad you have access to lots of support too, things like yoga, acupuncture etc. can help a lot with symptom control and quality of life. Rooting for you!

Bone mets hurt like hell, but there's a daily tablet you can take which puts them to sleep. They reactivate when you stop taking the tablet, though. Read about this in the excellent autobiography When Breath Becomes Air, about a surgeon battling stage 4 cancer.

Op thank you for your update. Glad to hear that there is a support system for you.

Could you maybe foster a cat? Some companionship, giving a cat a loving home until they find a permanent one.

[quote] Bone mets hurt like hell, but there's a daily tablet you can take which puts them to sleep. They reactivate when you stop taking the tablet, though. Read about this in the excellent autobiography When Breath Becomes Air, about a surgeon battling stage 4 cancer.

No one told me this, and thus far, I'm not necessarily feeling pain from them. They want to give me injections to help strengthen the bones and they want me to start on calcium supplements. I like to know everything, so I might pick up that book. Thank you.

[quote] Could you maybe foster a cat? Some companionship, giving a cat a loving home until they find a permanent one.

I've thought about that. Once I settle into whatever routine I do, I may look into it.

Fostering a cat is a great idea because you can request one that's very affectionate and loves a cuddle. Nothing like a lap full of warm, soft, purring cat to calm you down. If you buy a kitten you can't guarantee what kind of personality it'll grow up to have, and cats can be aloof.

OP, that Breath Becomes Air book is excellent but caveat that the surgeon dies in the end (after many years still working) and the last chapter is written by his wife. His bone mets had grown beyond the black spot stage but hopefully yours won't.

Another grim but compelling cancer bio is Spoiler Alert: The Hero Dies by the gay TV critic Michael Ausillem??? (a similar surname that I can't remember).

R171 Thanks for the spoiler!

[quote] Bone mets hurt like hell

This isn’t universal and varies from patient to patient.

We don’t even fully understand the pain process in general; let alone how it varies amongst individuals.

Get fixed before it starts eating into your brain.

OP, your health problems are being caused by your very large penis, your enormous tallywhacker is stealing all the blood to maintain your massive erections, & your prodigious amounts of thick, pearly jism from your humongous, throbbing member are causing dehydration.

What were we talking about?

I just had to come on and share what a lovely surprise I got from my laundry delivery service. I kept having to change my pick up days and then I had to switch cards because I put a large amount for medical bills on the one they used for auto pay. I apologized and let them know what was going on (not in super huge detail) and that to please bear with me because I may need to switch pickup days a few more times until my radiation schedule is set.

I just found a package at my door tonight and they sent me an Amazon gift card with get well wishes. I am so touched by that, and I really needed it today, which was not the best in terms of medical things. My MRI appointment was somewhat harrowing, and I had a phlebotomist and a tech who both just made me look like a Monty Python skit.

But this really made me smile. Thank you, laundry service!

I am a hard case, and I am crying. That is fucking beautiful, OP. You are too. My husband and I think about you often. We may never meet (though who knows), but we feel close to you.

OK I've sapped out enough. *sniff* OK, maybe not fully. Anyway, sending love from me (Victor) and my husband Marlowe.

R176 Little gestures and a little humanity can make all the difference in the world. Sorry about the medical misadventures.

When I was very sick and bouncing from specialist to specialist and lab to lab, and enduring agonizing pain for years, I tried doing what I had always seen my grandmother do when he crumbling spine caused her pain: I told myself, 'This, too, shall pass.' It seems like a trite cliché, but after a short while, it made a difference.

Along with that, thanks to a few adventures with ayahuasca, I learned to meditate. It became easy for me to close my eyes and conjure a little point of light that would bounce around and then with controlled breathing would grow and morph to take up the whole field of closed-eyed vision and wash an electric green light over and through me. Just from breathing into relaxation.

My first MRI felt sooo long with all the banging and clanging inside the narrow tube. The last one I had honestly felt like it was only a few minutes long because I went into that meditative zone with the comforting color washes.

Everything that comes goes. An annoying MRI is only 30-40 minutes of your life. Just a fleeting moment. Same with the prick of a needle. It's nothing. A papercut will keep causing you pain for days on end. Even an incompetent phlebotomist's needle doesn't compare to that; it comes and goes.

It may be easier said than done depending on how anxious you feel, but given all the medical stuff in store for you, including your radiation treatments, just digest that those are just isolated slices of time you'll carve out of your days and endure, and they will pass.

Any pain you may get from the treatments or the illness—it'll pass, too. Don't let it trick you into thinking your whole life is discomfort and pain. It will pass. Once you disempower pain by acknowledging out loud that it's got a shelf life, it will lose some of its power.

Love you.

Thank you both, R177 and R178. Lovely messages to wake up to!

R177, I don't know where you're based, but I highly recommend a laundry service. When I moved into the building in which I now live five years ago, I went from having a washer/dryer right out my back door to a dingy, filthy laundry room with three w/d for the entire building. Lugging the bags down there only to find that my lazy neighbors would just leave their clothes in the machines for hours on end drove me nuts. I started taking to doing my laundry at 2am so I would have a better chance of getting it done. Then a couple years ago, they replaced the top loader washers with front loader washers that were too big for the space. There's no room down there to move, and the washers reek of mold. So I said fuck it- and started using a laundry service. Yes, it's an extravagance of sorts, but the older I get, the less inclined I am to do stuff that truly annoys me if I can help it. And I'm happy to skip a few outings a month in order to have this.

I think back to my NYC days when I lived in a five floor walk up with no laundry in the building and I'd have to carry my bags over to the laundromat down the block at 7am so I could get in and washing before it got too crowded. For years I wouldn't even leave the clothes to be done by someone else.

See, you can tell I still have a remnant of a brain tumor. I just went off on a story that had nothing to do with anything. : )

I'm getting a little concerned in that the pain and numbness I was having pre-surgery seems to be coming back and I'm not sure why. I can't imagine that the remnant of the tumor that's still in there is starting to grow already, and enough to make a difference after only four weeks, but I cannot wait for radiation to start.

Speaking of- a couple days ago they did a cast of my head for the mask I have to wear during the sessions. For some reason, I thought it was just going to be digital, but nope, they laid me down on the table in front of the scanning tube, packed the back of my head with towels and then stretched this substance that felt like hot pizza dough over my face and around the top and sides of my head, down to my throat. It sat for a few minutes, and then they pushed me in and out of the tube to scan me a few times. I could breathe through my nose, as the material was porous enough, but as it dried, it tightened around my throat and I felt like I was being choked. If you want to get a good idea of how I felt, think of the scene in Alien when they bring John Hurt back to the ship with the facehugger attached to his head and its tail wrapped around his throat.

I told the technician after it was done that the mask was too tight on my throat and she said- well, it's going to be even tighter when it comes back. I'm going to need to be drugged to the teeth to get through this every day for six weeks.

You've got Industrial Disease!

It won't be fun Mr. OP, but think all those positive thoughts. Or at least tune completely out. Thinking of you.

OP

Astonished by what's happened to you and astonished at your great ability to handle it all. You're a bit of an inspiration to me.

Thank you. Be well.

Jesus OP, I'm sorry that the treatment is so harsh. I'm glad to "see" you when you post. Come here to vent, I don't know if you're religious but I'm praying for you.

OP, thinking of you and hope you're doing relatively okay.

I had the numb teeth and tendernesss around the eye. It was a cyst that had to be surgically removed and then grew back and had to be removed again ten years later.

It also came with morning vomiting and subnormal temperatures. Had to give up swimming too.

R188, he has already had a brain tumor removed recently - keep up.

I haven’t shit in 8 days. Please help.

Use your index finger and dig it out

Sounds like full blown AIDS.

More cunts coming in. FF and block of course. Sorry you have to see that shit, OP. Sending you cozy vibes.

Oh honey, I wish you had friends...

This asshole deserves no sympathy

He’s busy posting crap like:

[quote] If Alan was there, I'm sure everyone left with Monkeypox.

How ya doing on Halloween, Opie? Well, I hope. Keep us posted. We're going to support you through this to see brighter days. 😘

I'm doing okay. I resisted ordering ice cream from Salt & Straw today because cancer loves sugar. I don't want to make the same mistakes I made in the past.

Going to another radiation oncologist for a 2nd opinion tomorrow. Not that I feel like the person I'm with now is wrong, but my surgeon's office discussed my case with their oncologist and he says I should only need 3-5 doses of radiation instead of 30. I'm not quite buying it, because of the proximity of the tumor remainder to the optic nerve (1.5 mm) but it costs nothing to go hear his pitch, and if it sounds plausible, I can always bring it up with my oncologist.

I feel like the train has already left the station on my radiation- I've had the mapping MRI, the mold made for my head and the bone scan, and I really don't want to have to wait much longer to get started, but I'm always happy to gather more information.

Also, saw my GP today and he said to go ahead and enjoy my xanax during the radiation treatments, that I won't get addicted because the dosage is low and I'll have a couple days off in between each week, and radiation is hard enough that I shouldn't worry about undergoing it with claustrophobia. He's a kind man, but I get vibes from him that he feels I'm not going to make it through this (and I very well may not). However, I am choosing to give it everything I have and stay in the fight as long as possible because I have things I need to accomplish before I go, and I am not ready to go. I don't see him very often, but if I get that vibe from him again, I will politely but firmly let him know I don't need that energy.

Thanks for asking, R195. Hope everyone had a fun Halloween. I got a rock!

Checking in on you OP. How did the second opinion go?

I got a rock too.

Sounds like covid to me.

Things are not great. I spoke to my radiation oncologist on Tuesday because of the headaches and the bruising that came back under my eye for a few days (but are better now). He looked at the MRI they did on the 21st and said it looked like the tumor had started growing back. I asked if that was possible, as at that point it had been about 3 1/2 weeks since I had surgery and I never heard of a tumor growing that fast. He said it was rare. He also told me that the bone scan showed several more "spots" and that he wanted to re-think the radiation to 5 doses instead of 30 so that we could get to the systemic treatment sooner. Of course that set me into a tailspin. He said he was going to talk to my surgeon about the MRI to get his opinion and also talk to my regular oncologist and call me back the next day. I have to say that my hope went from about 90% to 0 after that call.

The next day I get a call from my regular oncologist asking if I'd started radiation yet. This totally boggled me because A- radiation was supposed to have called him the day before and B- they are brothers in the same practice and have access to the same records. How do you not know this? He said he wanted to start chemo ASAP and I said- Aren't we waiting for the genetic testing you ordered? Complete blank. I then reminded him that we spoke three weeks ago about him ordering further genetic testing on the tissue that they took out of my head, and that he was going to base my entire post-radiation treatment on it. He then hemmed and hawed and said that he would call the lab because he didn't have it. Which I took to mean he forgot to ever order it. He also says he wants to have a port put in (which I have had before when I had colon cancer the first time). Oh, and I asked him about the possibility of the tumor growing back in my head that quickly and another hem and haw and "it's rare."

I got home from my PT appointment and I get a call from his office saying that my first infusion appt is scheduled for Nov 14. I said- How can I be having infusion when I haven't even started radiation? So I completely flipped out. I had a follow up scheduled with the oncologist for this coming Monday the 7th (where I assumed I would hear the results of the genetic test). So I called both offices and I said that I needed both doctors present at that appointment and they were going to talk to each other with me in the room, we were going to go over every single question I had and every piece of data they had and explain why they didn't have certain things.

I feel so not taken care of, but I don't know what to do. I feel like I can't start over from scratch. I can't spare the time. I feel relatively secure in beginning radiation because of the two, I trust that guy more, and my 2nd opinion radiation guy felt he could also do it in 5 sessions. I just need MAJOR assurance that the optic nerve won't be damaged. And while I'm doing that, I can meet with another regular oncologist for a 2nd opinion, as long as I can get all my scans from the office to bring to the new doctor.

P.S. I emailed my surgeon about the whole tumor growing back thing. He told me he talked to my radiation oncologist yesterday and told him that whatever was on the MRI was likely collagen or inflammation. Now, is he certain about that- no. But he does NOT think the tumor could have possibly grown back that fast and he offered up two plausible alternatives, which neither of my oncology team did.

NOW ask me if I think I'm not getting out of this. (Actually, don't.)

R199 sorry that’s really shitty. Doctors can really make you feel helpless sometimes. Hope you have something nice planned for the weekend to distract you. Hopefully it’s just inflammation as suggested. Seems unlikely that it could have grown back that quickly.

[quote] NOW ask me if I think I'm not getting out of this. (Actually, don't.)

But I’m sure you still find your monkeypox jokes to be funny, asshole

R201, you can stop wasting your time. You're now on ignore. Whatever your issue is, I have no room for it. Thanks.

Good, you little bitch. Then I can continue to treat your disease with the same flippancy you treat others

To expect sympathy after making monkeypox jokes on a gay website is just bizarre

Your disease is mental

OP, Good for you for making your demands clear, and wanting to get everyone in the same room. That is especially impressive when your head is spinning from all of the mangled information/misinformation being tossed at you. Keep rolling with these twits until you can get that second opinion. I have to say that In my experience when things start out this tangled, they rarely get untangled. You don't have the time or patience for any fuckery to be sure.

We are here if you need to do any ranting or throwing of things. Or just a kind word. Big hug.

You know OP is just trolling you. She’s not sick, she’s just going for sympathy attention.

Why can’t you diagnose me? I’ve got more problems than a math book.

'He says I should only need 3-5 doses of radiation instead of 30. I'm not quite buying it, because of the proximity of the tumor remainder to the optic nerve (1.5 mm) .'

This will be why they don't want to give you too much radiation. Risk of blinding you if they irradiate the optic nerve.

'To expect sympathy after making monkeypox jokes on a gay website is just bizarre'

Fuck off back to the bathhouse, you chemsex slut. Not everyone who is gay fears monkeypox. You're the MonkeyPox Doonsday Troll.

* Doomsday

Yes, they explained that to me, R208, which is why I'm suddenly nervous that radiation guy #1 wants to now do it in five. I asked him if that would damage the nerve and he said no, but when I see him on Monday, I'm going to ask him to elaborate. However, if two radiation oncologists are saying 5 doses, then I feel a little better about it, but I still want an explanation.

I appreciate your explanation, though, thank you.

Although unfamiliar with the specifics of your case, think it very, very unlikely that a “tumor” regrowth is the source of your head symptoms.

Regrowth like that in a matter of days/weeks is virtually unheard of. Never have seen it in my experience. Have seen, though, “post-surgical” changes cause recurrent symptoms: swelling, fibrosis or just settling in of tissue to the deficit left from surgery.

May this ease some anxiety. Your plan to coordinate the physicians in an effort to integrate your care is a good one. Certainly not to justify their dropping of the ball, but physicians are human too....and sometimes (especially post-pandemic surge), everything becomes a bit too much for them. I apologize for colleagues and their issues and/or mistakes. It happens to the best of us; despite our sincerest intentions to assist in the healing process.

Trusting that a reset when you all meet will put things back on track and provide for a smoother course.

Hang in there. We (with exception of malicious trolls which you have wisely blocked) are sending you well wishes and our best energies.

Thank you, R212. That was a really sweet message and I appreciate it and it made me feel better.

One thing I didn't mention in my last update that I should have was that I attended my first Cancer Support Group meeting last night. They do them via Zoom and I want to say there are about 12-14 people in the group, but not everyone was there last night. They were lovely, supportive, warm people and immediately made me feel welcome and I hope that I can return that kindness to them and to anyone who joins the group in the future.

What I also realized, listening to their stories (which I will not elaborate on for privacy's sake except to say that so many of them are really struggling and have been doing so for years), was just how incredibly lucky I was the first time out with cancer six years ago. I had my surgery, which went well and left me without needing a colostomy, and though my chemo was fraught with a lot of side effects, they were nothing compared to some of the stories I've heard. I also realize I am not going to be as lucky this time around. But if these people can keep making it through and who are older and in less good shape than me, then I can get through it. I just have to remember that when I'm going through the side effects.

[quote] But if these people can keep making it through and who are older and in less good shape than me, then I can get through it. I just have to remember that when I'm going through the side effects.

This. Is. Key.

Great support community you’ve tapped into there. And have here also.

Keep the momentum going; despite setbacks. There will be progress forward and then some steps backwards. Do not allow the steps backwards to impede your progress. This is akin to running a marathon. You’ve done it before. Although it may have been a different marathon, you know how they go.

Most importantly, have faith within yourself and your body. Trust that with the adjunct assistance of your physicians you can return to your natural whole self: free of cancer.

The power lies within you.

[quote] Fuck off back to the bathhouse, you chemsex slut. Not everyone who is gay fears monkeypox. You're the MonkeyPox Doonsday Troll.

What a charming frau cunt you are

You’re the one who keeps making AIDS jokes, aren’t you?

How long before we see OP’s GoFundMe?

[quote] Not everyone who is gay fears monkeypox. You're the MonkeyPox Doonsday Troll.

Nobody who’s really a gay man thinks it’s a joking matter

Funny how you do

I'm sorry for what you are going through, OP. It sounds to me like they think they found some other spots from the bone scan, and that now they don't have confidence in the radiation alone getting rid of it. So they want you to do chemo ASAP. This happened with my mom's lung cancer, it was very diffuse so chemo was her only option for success. They pushed her to have it immediately as it was stage 4. She tolerated her first treatment very poorly, only a few days later did they get the mutation results back to find she would best benefit from a targeted chemo pill. That was much easier on her and she lived another 5 years.

You should push to find out what kind of testing they have done as you should have some results by now or very soon. Knowing what you are dealing with will give you your best chance at success.

Thank you, R218. That's good advice. Those are definitely questions on my list!

Oh, also, R218, did they have your mom get a port? I've had one before, when I did chemo in 2016, but of course had it removed. They want me to get another one, but I would rather wait to see if I am a candidate for a pill form instead.

r220 No, she was stable for 5 years on a targeted chemo pill daily. When that stopped working, the cancer mutated from non-small cell to small cell (very rare, but happens in 5% with that mutation). She went pretty quickly after that as it spread to her liver and spine. But the 5 years that she had, she did very well.

I forgot to mention, the first doctor my mom saw really dropped the ball. It was only when she went to Mayo's in Rochester that they did all the appropriate testing and found the mutation. I believe if she had not gone, she would not have had the time that she had.

Thank you for sharing that. I'm glad she was persistent and got the information she needed.

R152/r156 here. Thank you, OP and others, for your well-wishes. I'm apparently over Covid, my symptoms' being only coughing and fatigue (but I'm a lazy beeyotch anyway). I did need an inhaler (Albuterol) several times.

OP, here's what you do this weekend: Root for the Phillies! Haha! I keed, I keed. Not really! But you are going through so much physically and mentally, waiting until Monday for any clarification, that I wanted you to smile!

Remember: Vairst Letty is on your side. Mrs. Patsy Ramsey, formerly of Boulder, CO, has some pineapple for you. And Larry King wants to interview you (you'll meet Pia Zadora, too!)!

Today, 11/05, is my birthday. I promise to blow out the candle in my Tastykake Eclair while wishing you and all of us the best!

Happy Birthday, R224! I hope you enjoy your day very much!

And as a Mets fan (and also as a huge baseball fan in general) I am torn about who to root for tonight. Of course I hate Philly, as they are one of our biggest rivals. And the idea of Syndergaard getting a WS ring when he's barely pitched in three years and the way he treated the Mets when he left last season makes me nauseous. HOWEVER....

The Astros are cheaters, plain and simple. And they deserve nothing. So seeing them lose to anyone makes me happy. My only saving grace with having them win is that Trey Mancini, who I am a HUGE fan of (and who just got to the team from the Orioles this season and was not part of the cheating) will get a WS ring.

Honestly, I can't wait for the series to end so we can get to the fun part- the trades! the deals!

xoxo

Thank you, OP! But as for the Astros, one word: Texas!

👎😁

Hey OP. Thinking of you. How has your week been so far?

Yes, LA has been cold and stormy - I hope that you have been able to rest!

Oh dear, the first reaction I had to your symptoms was a brain tumor. A dear friend was diagnosed with one 2 years ago. Please keep us informed. You should take an advocate with you to doctor appointments. This can be a friend or relative. Have them take good notes on everything said and done. This could be very helpful down the line. It's good to have someone with you that can ask questions and be someone strong to lean on and go over things with. A sounding board is a great thing OP. Best of luck to you. I care very much that you are going through this.

Hey all-

It's been a whirlwind of a week, so I'll try to bullet point it for you.

- Had a powwow with both oncologists who seemed to be able to answer all my questions and left me feeling better about things than I had a week ago. They asked me to participate in a study for a non-chemo drug which I said I would consider.

- Got my port put in on Wednesday. All was fine, though I'm still a bit sore, and my chest hair is already growing back in so I'm itchy. I decided to get my port put in on the left side this time because I seem to have trouble sleeping on my left ever since the craniotomy and I didn't want to fuck up my only good sleeping side. So I'll have matching scars.

- Radiation kept being delayed until I threw a minor tantrum about it, and we began yesterday. I've had two doses so far and I have been surprised at how tolerable the procedure itself is. I am very grateful for that. I think I might actually be able to do without the xanax for my next dose. I've had slight headaches so far, but nothing awful.

- Radiation goes through next Wednesday and then I begin chemo on Nov 30. That I am wholeheartedly dreading. I've tangled with it before and it's awful. But I'll make it through.

Thanks for all your continued good wishes. They really do mean a lot and I appreciate you all.

Thanks for the update OP. I am so glad to hear that you are feeling more positive. Keep throwing tantrums where needed. Greasy wheel and all that. Treat yourself to whatever your heart and tastebuds desire. Hopefully, you can take a mental break from dreading the upcoming chemo. Keep cozy in the moment. *smooches*

I hope you don't suffer, OP. Best of luck.

OP, I work in clinical trials so im curious to hear why theyre asking you to join one in the middle of chemo + rads. Is it to replace chemo? Or afterwards for maintenance? Targeted immunotherapy?

Glad to hear youre tolerating the radiation. In my experience with Head & Neck most people have the toughest time due to that (swallowing issues etc).

Shellfish allergy and Epstein Barr

^Dropped on head at birth and dad abandoned him while going out for cigarettes

OP, I'm so happy to hear that you are able to tolerate radiation without xanax. I know that was a great worry, and I'm so thankful that has been lifted away from you. I'm pulling for you 100% and look forward to your updates. Sounds like you have good doctors, which is key.

R233, I'm not sure how much I can say about it without breaking some sort of rule (or if I'm completely off the mark with that) but it's not a chemo drug itself, it's a drug that's supposed to help mitigate the severity of a couple of particularly bad side effects caused by this particular combo of chemo drugs.

Ah ok makes sense! You can always get a copy of the consent to review fully, to see what extra work is involved for you, before making a decision.

I love OP! Such a stoical, articulate guy.

Well, thank you, R239 (and everyone else).

I'm not sure how stoical I am this morning. My left eye is very blurry and I'm having a had time tolerating light with it. Weird thing is when I close my right eye, my left is less blurry. It's like both of them together are blurry, but sharp on their own.

The left side is where I have been getting the radiation. Thanksfully I have two days off before I got back for the rest of the doses. I'll see if things improve. I wish I had a pair of big Barbara Barrie-Private Benjamin's mother sunglasses.

OP

What's happening?

Hey All-

Sorry for being out of contact. It was something of a hard week with radiation. The sight in my left eye was double for about 8 days and finally seems to be back on the mend. I finished radiation today after some breaks in between, and we will see what happens with that spot. They put me on steroids to try and lower the inflammation they think was affecting the the muscle of the eye and today is my final day on it.

My back has been absolutely awful. It's unclear if the pain is from bone mets or from a worn away disc, both of which were discovered around the same time, but I got an epidural in my lower back last Tuesday and it doesn't seem to have done anything. They warned me it might not, especially if it was due to the bone mets and not the disc, so I knew going in that it was a crapshoot. However, the pain is constant and nothing really takes it away.

What we are going to be doing next is more MRIs and a fitting for a back "mask" (similar to what they did for my head) and they are going to try and zap some of the spots on my lower back/spine in hopes that will lessen the pain. But that's going to take a few weeks because of the holiday and how long it takes to make these molds, etc. What I'm trying not to do is rely on pain meds. Even Tylenol (which is hit and miss) I don't want to go overboard on and kill my liver. I'm still doing PT twice a week, but once chemo starts on Nov 30, I'll have to stop it.

Couple good things- I was very relieved with how not terrible radiation was for the most part. Yes, the eye thing sucked, but I thought I was going to have to be drugged to the teeth to get through each treatment and I really didn't. That made me happy, and I have to take small victories.

Also some good news on the career front, which I'm not going to go into, but am feeling really grateful for because I need a reason to fight. It's not the mental thing this time around, it's really the physical thing- I'm worried I'm just not up to the challenge physically. Everything has changed so much since Covid. For most of the time, I have exercised a lot in my apartment (really only stopping over the past 2-3 months because of all this that's happened), but I'm mostly sedentary and I feel like I have a week and a half to get back up to speed to have the energy to tackle this.

I also got to watch TV again last night for the first time in over a week and, of course, I chose "Smile," which made me yell in disgust halfway through- You don't deserve two eyes! But I watched a documentary about Rickie Lee Jones tonight and that partially made up for it.

I hope everyone has a great Thanksgiving. I am grateful for all the well wishes and they mean a lot. And they help.

Some of you guys are just making up diseases.

R243, I guarantee you will have a miserable holiday all by your lonesome. Doesn’t have to be that way, you know.

Oh, I'm also thinking about putting up a Christmas tree this weekend. I haven't done it for several years and I have so many decorations and stuff. Might be fun while I still have the energy. Put on some old Christmas albums and make some tea.

A bit OT, pain directly in an eye, or both, can sometimes mean some eye disease, such as glaucoma. I know people who never needed eyeglasses who have glaucoma.

Appreciate the update, OP. You’ve been on my mind and in my heart.

Encouraged the eye is “on the mend” following the treatment. Am putting forth similar thoughts and energies toward an outcome for the back…..once treatment begins for it.

Congratulations on the career front. Nicely done.

May your Thanksgiving be restful, yet energising for all that’s to come. [And pain free-or pain (at the very least) that’s tolerable.]

Best wishes for the week.

Thanks, R247. I actually broke down tonight and took a Tylenol w/ codeine, my first, because my back hurts so much. I cannot wait to get to PT tomorrow.

Hugs OP. Here’s trusting that the med takes the edge off the pain and the PT is as you wish.

Thoughts your way….

A Christmas tree and PT sound good, OP. Try to do daily gentle stretching on the floor every day. Be careful of Tylenol- after a back injury I took so many, at this point my stomach revolts on a single dose. Enjoy as much as you can.

Hi OP, I really do hope you can find the energy to put up a tree. We have skipped doing one the last few years for various reasons, all depressing, and it actually seems to have made it more depressing. Might try it this year in your honor! Do it in wee chunks so it doesn't feel overwhelming.

I understand about the hesitancy about taking anything with Tylenol, but sometimes the pain makes everything worse and you need to give yourself a break from it. Or at least get it down to a slow simmer. If you haven't already, you might want to ask for a script for Percocet. Less Tylenol, more pain relief oomph. I hope the PT session goes well, and you can get back to your nest and relax a little. Hugs.

Happy Thanksgiving OP! I hope you do whatever you want today and don't touch a thing you don't want to do. Sending you warm thoughts for a mellow day.

Having a particularly bad couple days with pain from my spine. I'm afraid I'm going to have to get a prescription for some heavy pain meds. It's getting to the point where I just can't function. Sitting hurts, lying down hurts... standing helps for a bit but I can't stand for hours and hours. I never thought I'd say this, but I absolutely cannot wait until I can get radiation again (if it means it will relieve the pain).

It has definitely been depressing realizing that the pain is coming from bone mets, and bone mets are never followed by a good prognosis, but if the pain was lessened, I think I could take this on a little better. I'm just so afraid of becoming dependent on painkillers (not that I've ever had an issue with addiction, but I suppose you have to start somewhere).

Ok, whine over.

That isn't whining, that is telling it like it is. I am so sorry about your pain levels. The sooner you can get that medication the better. Constant pain is going to put the brakes on any level of improvement both physical and psychological. Please check in when you find something that works for you. Hopefully tomorrow you will have some good stuff. Addiction is the last thing to be concerned about right now. It is all about finding any amount of comfort possible. Besos.

Thank you. My doctor called me this morning and he called in an Rx that I will pick up tomorrow morning. I was up last night pacing the apartment until 3am, trying to keep the pain at bay. I finally passed out for a few hours. For some reason, the pain is so much worse at night and I can't figure out why.

And then today I had to finally focus on something career-wise and then get on a call to discuss it with a colleague and it was the happiest and lightest I've felt in a while. I was focusing on something that means a lot to me and that I'm passionate about and for that hour, I forgot I was in pain and wasn't focused on all the bleakness. I cannot tell you how grateful I was for that hour and I am going to try and create as many of those opportunities as I can handle going forward.

I am very happy to hear about your uplifting experience regarding your passion project, OP. May you these good times come to you often and without too much effort.

I recently heard about this song from the duo Marconi Union. The song, "Weightless", was designed with the input of sound therapists. It's been proven to reduce anxiety and have a positive influence on heart rate and blood pressure. It's considered to be so relaxing, that one should not listen to it while driving. I listen to it on Spotify, but here's a You Tube link. It seems to have many parts and this link is for the full version.

You are in my thoughts...

I hope you get some powerful painkillers onboard soon, OP. Pain can negatively affect mindset so much. All my best wishes for you.

Hi OP how are the painkillers working for you? Have you finally got a bit of relief?

Not working, really at all. I went from Tramadol to Norco and they barely take the edge off. Worse, I think they are causing insomnia. I have barely slept more than 3-4 hours a night for the past week or more. I'm stopping them and I just called my oncologist's office to see if they have any recommendations for a palliative care physician. I need some relief, especially at night, when the pain gets worse. I also read that the opioids that are in these meds clash with SSRIs, which I have been on for several years. And I can't just stop the SSRI cold turkey to start taking opioids.

And the past few days I've been having pains in my groin. My oncologist says that nothing from the Oct PET scan is showing up in the colon, but I feel like these pains are similar to the first time around. I know I also have bone mets on my pelvis so maybe they are what's causing that pain. But now it's back AND front.

Yesterday was my first session of chemo. 10 hours in the chair and I brought it home with me for 2 days. I get it removed tomorrow around noon. I can already feel some of the side effects, but that's not surprising. I remember them from before. One is complete intolerance of the cold, touching anything cold, ingesting anything cold... I bought myself an electric tea kettle so I can keep water on at all times and stay hydrated. Also had a lot of foot and leg cramps last night.

A nice thing that happened- I can't shower for two days when I have the pump attached to me, so when I got home I did a Hibiclens wipe bath and then my friend came over to wash my hair. (I have pretty long hair in the wake of Covid, and because they made the radiation mask with it, they asked me to keep it as is for the time being.) It was a nice, small kindness after a pretty terrible day and I really appreciated it.

I hope you get sone relief at night, OP.

OP, I feel for you. Had my second chemo Wednesday, and my oncologist prescribed steroids (Decadron) for the pain. Also, I found the leg and foot cramps were caused by the nausea meds (Zyprexa). I am very fortunate that I have had no nausea as a side effect, so we stopped the nausea meds and the cramps went away. You might ask your oncologist about that. (I'm local to you, at Kaiser in the Valley). Good luck.

R261, do you mind if I ask where your pain is?

Also, please keep us posted on how you're doing. And if you need any kind of support, check out the CSCLA online. cancersupportla.org

Are you a candidate for a PCA pump? That device delivers a sustained dose of pain meds (along with an occasional "bonus" dose when you need it) so you don't experience "peaks and valleys" when your oral med begins to wear off. Just a suggestion -

I'm not sure, RN, but I just called Cedars Pain Management Center and they told me my dr. needs to call in a referral and then they can see me.

Good for you - (although I thought referrals had gone the way of the land line phone, but apparently not - money hungry vultures) You are really your own best advocate!! Keep on swinging, buddy!

OP sounds like a bad episode of St. Elsewhere (now on Hulu).

[quote]I recently heard about this song from the duo Marconi Union. The song, "Weightless", was designed with the input of sound therapists. It's been proven to reduce anxiety and have a positive influence on heart rate and blood pressure. It's considered to be so relaxing, that one should not listen to it while driving. I listen to it on Spotify, but here's a You Tube link. It seems to have many parts and this link is for the full version.

TEN hours of that?! The sound therapists should be fired. That Marconi Union 'song' with the repetitious constant thumping would give me anxiety AND a heart attack! Then, I'd jump out a window.

Repetitious thumping such as the sound of a relentless bass are actually known to cause people to get angry, agitated and anxiety ridden. Most unpleasant sounds can do that. Imagine a child screaming or a dog barking for hours on end? Same difference.

OP, my pain was primarily in my feet and hands. Felt like electrified hot pokers were being jabbed into me repeatedly. Myalgia and neuropathy, but I also had more generalized over all body pain. I am hopeful - at this point after my first chemo I was in agony. Today, with the steroids, I'm comfortable. For me, it's a magic pill.

Hi OP, just bumped into your thread today and read through it. I was caught by your initial mention of numbness on your face. And then the oh no cancer diagnosis. I also have numbness off and on around my upper lip and into the left nostril. And I just got a cancer diagnosis about 5 weeks ago. Was supposed to have surgery last week but a chest infection delayed it until next week. Meanwhile I am spinning out about what this delay might mean.

Well my mind has been in a dark place and I am trying to ignore the numbness because there is enough on my plate right now but at some point in the next couple of weeks I will speak to my doctor about it.

I think the worst outcome is the one I believe is going to happen.

People who go through cancer treatments are extremely brave. I am really sorry for the pain problems you are having OP.

This is my first experience with having cancer. I don’t feel sorry for myself but am scared as hell and sorry for my family. I share your sentiments about not wanting to burden people with my experience and I’ve only just started.

Hope you are going well OP with your pain management.

All my best to you as well, R269.

Hi OP. This is so fucking shitty and I have no words. Hopefully palliative care can come up with a good plan for you. That you were even given Tramadol which is NOT a great painkiller blows my mind. Norco isn't all that either for what you are dealing with. Please let us know when you do speak to a pain management specialist and what plan they outline for you. It is such a fucking touchy subject in this country. I hope you aren't given the run around. Squeak that wheel, baby!

Alexandrite, I want to say hello and that I'm happy you found this thread. I am terribly sorry to hear about your diagnosis but I hope you can meet it head on and do whatever you can to beat it.

You didn't mention what kind of cancer you have (and you don't have to, but I wondered if it was in an area that might be affecting the numb areas on your face. My numbness hung around for about a month or more after the surgery and I've really only started to notice a couple weeks ago that I don't have it anymore, so it's very likely whatever surgery you're having will alleviate it.

Don't freak out about delaying the surgery a week. It's super frustrating but you have to be in the best health possible.

As for being in a dark place right now, I can only speak for myself, but I can't imagine that I'm alone in this....

Cancer patients- Our lives are one big dark place right now and it is very easy to huddle in there. I cannot tell you how many times a day I tell myself negative things about what's going on with me because it's just a reflex action. But that's going to get tiresome soon and you'll look for ways to pull yourself out of it. Just be patient and good to yourself.

Thanks, R271. I am hoping to have an appointment with someone this coming week and I will be calling them first thing Mon morning now that I know they got the referral from my Dr.

Good luck..!

Sending nothing but the best wishes (and virtual hugs) to all the DLers -- in this thread and others -- dealing with health challenges. May your days be as pain-free as possible, your treatments successful, and your nights filled with deep, restful sleep.

OP, r269, r275, et al:

🙏

OP, fentanyl patches work for bone mets. There is also a chemo pill taken daily which puts them to sleep - the guy in When Breath Becomes Air was taking them.

Hi OP, have you found anything that works yet? I hate the thought of you suffering.

I finally had my pain management appt today. He has prescribed a couple of things for me that are non-narcotic, including a nasal spray that helps with bony pain and a cream to spread on my back. He also suggested acupuncture. But he does not want to do any needles like you would for pain blocks and does not think I'm at the point where narcotics are the last resort. (Though he seemed to think that was coming, which unnerved me.)

I will pick up the Rx tomorrow morning and call the acupuncturist. I've done acupuncture once before (when I had chemo the first time, it wore away the sheaths of the nerves/tendons in my wrists) and it didn't really do anything for me, but I am more than willing to try it again.

Good for you - I was going to suggest acupuncture before, as I have always been an advocate for its benefits. Glad you are willing to give it another go.

Thinking of you - stay strong!

OP, in your position I would be accepting all the narcotics, but you also need to obtain a stimulant to take at the same time or you'll be sleeping your days away. Adderal, phentermine, amphetamine. You can buy these online.

The chemo tablet that puts the bone mets into hibernation is called TARCEVA. One tablet a day.

Whilst taking this, the neurosurgeon in When Breath Becomes Air was able to return to work.

Hope you're okay, OP.

Thank you, R282. I have an appointment with my oncologist tomorrow and I will ask about it.

May I share that I have had 2-3 decent days, pain wise. Not completely pain-free, but manageable. And there have been other issues. It's super dry in LA right now, so I have been waking up at 3am with terrible sinus headaches which go away when I get up. I've had these on and off for years when then weather gets like this, so I know what it is. I've had to change my sleep schedule to during the day when it's not as dry out, and that helps. The mouth sores are also painful, but they are starting to recede and I will make sure I get something to take for them by the time the next dose of chemo comes around.

But the great news is that since Thursday I have not been in the agony that I have before. I can't tell you why. I'm not taking anything new and I stopped any opioids weeks ago. I'm only taking Advil. The past two days I've been able to get on the treadmill for short periods of time. Now, of course, it's only at 2.0-2.3 speed and level, and I've done between 15-25 minutes, but it's more than I've been able to walk in months and it has done wonders for my mental state. I feel like I could do more, but I'm taking it slow and cautiously because I don't want to wake up the next day in pain. My goal is to try for two 30 minute rounds per day, one in the morning and one in the evening. I used to do an hour on a circuit that went faster and slower and changed inclines, but I'm nowhere near ready to get back to that.

I had my pain management appt on Thursday and there wasn't a whole lot he felt he could do for me. He prescribed some nasal spray that women take for osteoporosis but apparently has a painkiller effect, and an over the counter cream that I've already tried and does nothing. I checked in on the Rx to see if it was ready and found that there was a 2nd prescription for a nasal spray of Naxolone. For those who don't know what that is, it's Narcan, which is only to be used in cases of opioid overdose. I called the pharmacy to make sure they got it right, and they were puzzled about it. I called the doctor's office the next day and his nurse said- Oh, hmmm... that must have been a mistake. Can you imagine if I had just taken it without question, like so many people would have? I won't be going back to that doctor.

I know I'm always gloomy, and I'm sure that will come back again before too long, especially since chemo is right around the corner, but I have just been relishing these past couple days where I feel human, and I am so grateful for them. I've been in constant debilitating pain in one form or another since early September and it's been exhausting. Even having it ease off as much as it has while still being present has been wonderful and has made me feel a little more hopeful. I know what's around the corner, but I want to do as much as I can to stave it off for as long as I can and not being in terrible pain goes a long way to accomplishing that.

Please get a humidifier OP, especially for sleeping.. It will improve your life

P.S. Glad to hear you're on the treadmill, and are having some good days. Thinking of you

Glad you’re having some good days. Hang in there! Thanks for the update.

[quote] Please get a humidifier OP, especially for sleeping.. It will improve your life

I got one! I've used it a few times and have not noticed any difference. At first, I had it on the floor because I had no place to put it where I wasn't worried about it leaking (I have concrete floors), but then I read that it really has to be head level to do anything, so I bought a TV tray table and I still didn't notice any benefit. The next time I sleep at night, I will try it again.

I'm sorry for your suffering, OP. It is the one thing in life that I can't abide above all else.

OP, this may be a bit out there but some say it helps…

In the midst of my 2nd dose of chemo and last night I developed a high fever of 103. I did not want to go to the ER because of all the COVID and RSV cases so I waited until this morning and saw my oncologist. They ordered two blood cultures, another CBC panel, another urinalysis and a chest x-ray. I developed a slight fever after the first dose but it never hit 101, which is the number they say is the danger level for chemo patients. I am hoping I don't have an infection. My oncologist thinks it might be a bad reaction to one of the drugs, but we'll see. It was a very unpleasant and harrowing night and morning. Thankfully, my temperature finally went down to 99.

Sounds very unpleasant R290.

Guess I better get me a working temp gauge. Almost certainly beginning chemo in early 2023.

Recovering from surgery this week.

Psychologist rated me as severely depressed. No shit!

I am so terribly sorry that you are experiencing such worry and pain - you too, Alexandrite. I have been under worry and stress lately but I think about what you guys are going through and boy it makes me snap out of it. God Bless you guys - wishing you the best!

Hi OP! Merry Christmas!!!! It is a mild and sunny day here in LA. I hope that you aren’t in pain and are able to relax and experience some peace and joy today!

Glad to be able to get on today to be able to wish you the best in the coming days and weeks. I hope your pain is under control and that you are experiencing long stretches of comfort.

Merry Christmas to everyone! I am doing much better in terms of my back pain and my fever has been gone for close to a week. Feeling good and been getting in as much exercise as my body can handle and it is really improving my whole mood. Another 2 1/2 days til my next chemo infusion so I am trying to get as much enjoyment out of my time before I have to go back.

I hope everyone is having a wonderful holiday. Grateful for you all.

Glad to hear that. Good for you that you're exercising, and best of luck this week, OP.

Great news, OP. Exercise is definitely a mood lifter. Wishing you continued good results.

Merry Christmas, OP! Hope you were able to enjoy the day comfortably.

That's great OP. I've had the flu and unable to decently exercise, so want to get back to it too. Cheers for a strong week to come!

So glad you had a good Christmas, OP and that you have been having a string of good days. May they continue. Big Happy Boxing Day hugs to you.

Third dose of chemo today and i have the pump in until Friday mid-day. I also start radiation on my back tomorrow morning for 10 days. Feeling lousy already and i developed a fever at 5:30. Trying to make it through the next 3 days. I don't even want to move.

The good news is my alkaline phosphatase in my blood went from 554 to 184 in the past two weeks, which is great. 0-125 is a normal range, and I am hoping it means the chemo is working on my bones and that I will get some extra time. My white blood cells have dropped, as well as a few other numbers, but nothing horrible (yet). Still low in about a half dozen numbers. I just need my fever to abate before it gets higher.

Good news - bad news - good news - Wow - those fevers that you have been getting are scary! You ran a high temp after your last chemo didn’t you? Does aspirin and vitamin C help you break your temp? Gosh, having radiation while you are feeling sick already - sending a prayer that you make it through the next few days without feeling terrible, Do you think that you will be able to sleep after your radiation treatment?

My oncologist thinks the fevers may be from an experimental drug I'm on (which is for side effects, not a chemo drug). I don't know how the next couple days will shake out, but I took 4 Advil last night around 9pm and It's now around 5am and my temperature is back down to normal, which is a relief. Hoping it won't spike again.

I'm not too worried about the radiation. It's 10 doses over 10 days and short. My biggest concern is if there will be an issue with me exercising once I feel better early next week. Of course, I've never had it and chemo at the same time, so we'll see.

Wishing you the best of luck, today!

It is raining cats and dogs today in LA - I hope that you are rested and cozy and out of pain and enjoying your day!

I'm almost finished with radiation for my back and it's been causing me all sorts of gastric distress. I have two more sessions to go. And I have chemo tomorrow. The rain has been bad, but i'm close to the clinic so the drive has not been too bad for me.

Good to hear it's almost over, OP. Hope the stomach issues resolve themselves.

Ask your doctor is he/she thinks Levsin (hyoscyamine) would be of any help with your stomach issues. It helped someone I know that was undergoing radiation treatments.

Are you still involved with the cancer support group? Any luck finding a therapist or do you think the support group negates the need for therapy?

Incredible to read how you are handling it all. I have my own issues and I really don't think I could handle any more the way that you seem to be doing.

Without too much detail and only if you are comfortable doing so, can I ask what your job is and how that has been managed while you are dealing with doctors and hospitals?

Hope this week is a better week for you.

Thanks so much, R307, for the advice. Much appreciated.

I have been continuing with the cancer support group and they are great. I have not been able to find a separate therapist, mostly because none of the ones who specialize in cancer patients take my insurance (or any insurance). But the support group has been helpful and is run by a specialist therapist.

As far as work goes, I'd rather not discuss what I do, but no I am currently not working because of my treatment. The last time I went through chemo I worked full time and only took off one day every two weeks for my infusion day and timed it so that my worst days would be the weekends. But this time around, I'm on additional drugs that are giving me a lot worse side effects, and with Covid/RSV plaguing us, and my spiking fevers every time I get chemo, plus the radiation appointments, etc. I have decided to do what I need to do from home until my treatment is done.

Thankfully I sold a property this summer and though I didn't get a whole lot for it because of what was still owed, I have been able to use that money to live on while I'm not working. It's not ideal and I would have preferred to invest it, but I'm grateful that I have it to help me while I can't work.

Thinking of you, OP. Hope you are having a good, pain-free as possible weekend.

Thanks for updates OP. It can't be easy for you. I think you're just about done with the alien laser beam treatments, and hope your GI issues will settle down. January can be a tough month anyway, so get cozy for now and prepare for exercise sessions ahead.

Been MIA for a few days. I think the radiation has caused severe diarrhea, which has been going on since Sunday. The big problem is that I have the urge to go every hour and it's only mucus, nothing else. It's causing great pain and I can't even sit down for long periods of time. This is my fourth day with it. My oncologist sent in a couple Rx to slow my system down, but I'm worried about constipation. It's been horrible.

The constant anxiety and worry that you must go through daily must be overwhelming - I appreciate how stressful this must be! Sending you my best wishes and positive thoughts - I hope that you can get some comfortable rest.

Hi OP

Have any of the new medications helped with the diarrhea? I'm the person above that mentioned Levsin, and while I mentioned in reference to radiation treatments, I was also prescribed Levsin when my system was moving too fast and I had constant diarrhea and it was very helpful.

Whatever they prescribe, I hope it helps and you've gotten some relief.

Apologies in advance for the graphic description to follow:

It's not even diarrhea, it's just mucus. And after I expel the mucus, I then have about five or so bouts of what feels like dry heaves (only from the other end). It's horrible and I feel like I'm going to turn myself inside out.

My oncologist made me come to the clinic today to do blood work, a CT scan of my pelvis, get fluids, and I talked him into a prescription for an anti-spasmodic. He also gave me steroids to bring down the inflammation. I was terrified to leave the apartment because I was worried I would have an accident. They brought out this enormous bag of fluids for me and I was like- couldn't I just drink it and get out of here?

What a nightmare! I hope that the medicine, fluid and steroids get that situation to settle down - you are battling like a warrior!

Thinking of you OP. Hope you're nearing the end of the worst of it.

Nothing has helped and my plan now is to go to the ER around 6am, hoping it's not terribly crowded. I'm skipping Cedars and going to St. John's because the last time I went to Cedars ER I waited nearly 10 hours to be seen. I'm terrified to go because I have no control over when the spasms happen or how intense they are. I wanted one of my doctors to admit me, but he said he couldn't.

It's now been seven days, I've taken two full days of steroids and anti-spasmodic drugs and neither has helped. I'm worried I'm going to need surgery on the hemorrhoids.

Damn OP. I’m hoping and praying for you. Sometimes steroids take 4-5 days to work, but you’re doing the right thing by going to the ER.

Thank you, R318. What's really freaking me out is how much mucus and blood keeps coming out. I know the blood is from the hemorrhoids but where and why all this mucus and rarely anything else. I just hope the hospital can figure it out.

Do you have a friend or family member or even a good neighbor who can take you? Again - I am so sorry that you are going through this terrible uncertainty and pain.

Checking in on OP, please get back to us and let us know how you’re doing. I am thinking OP is in the ER or hospital right now.

OP I'm in West Hollywood- do you need a ride to St. John's? Is it the one in SM or Oxnard?

OP, this must be hell for you. Most certainly keep us updated. I wish I could help more tangibly than sending support via words.

r322 You are a truly good soul. (I am not even going to ruin it by asking what are you doing here)

Thank you so much, R322. I drove myself. Wasn't much help, but I followed up with a proctologist this morning who feels this is going to last for another 4-6 weeks, but gradually improve during that time. I have to start eating more though. I went to pick up an Rx after the appt and ran across the street and almost blacked out.

I've mostly been in bed so I can stay off my ass.

Good to hear from you, OP! Quite a few people here worried about you. Ugh, I’m sorry for what you’re going through.

I'm sorry. I have just been in so much pain I've been trying to stay in bed as much as possible. I didn't mean to make anyone worry. I appreciate the concern. I really do. Thank you.

What are you eating, OP?

Sounds better I guess, but if you’re in a bind, I’ll be more than happy to drive you to the hospital. Thanks for checking in. Between Brian, Joe, and you, DL has softened my little black tarry heart.

I'm not eating much. Mostly protein shakes and yogurt. I went to a proctologist yesterday who said I have radiation proctitis and that it would take about 4-6 weeks to heal fully. He scoped me and said one of the hemorrhoids was thrombosed but that it should be okay and to call him if things get worse.

I got home and I actually felt better, the spasms were quieted somewhat. Then later in the day I had an urge and deposited what seemed like a fuck ton of blood into the toilet. The hemorrhoid must have burst. I called his office but he was gone for the day. I bled again about a half hour later and then stayed in bed the rest of the night. There's been a little bit of spotting, and now I know what it feels like to be a 12 year old girl in a Judy Blume novel.

I am worried about infection and have been trying to keep things clean. I can't even celebrate that the spasms have lessened because of this happening. I'm really bummed this morning.

OP, so sorry you're continuing to have these awful side effects.

Wondering - if you are up to it - whether hot or warm baths would help at all. Relax you, ease the pain, and help to keep the area clean?

After hemorrhoid surgery it was very helpful for me.

Oh god, that's horrible. Get on the phone and if they try to give you the run around, show up and force your way in to be seen Infection is indeed something to be concerned about. Not trying to freak you out, but sepsis is a concern for sure.

I did get the procto on the phone late yesterday and we discussed it. He told me what I needed to do and that the worry of infection was really minimal. I am a very clean person and a bit of a germaphobe so my natural inclination is to keep things clean.

I thought things were getting a little better yesterday but then I got rocked with 2 hours of spasms and I had to go to bed with a valium. At least the bleeding seems to be totally finished.

This sounds like a nightmare! What must be so awful on top of the pain is the fear of the unknown. Since you have been seen, you have your medication - it sounds like they are saying ( and I would find LITTLE comfort in it) that hold on a few days - like giving birth - in a few days this will pass. You must be beyond exhausted and then the exhaustion of anticipating the pain. Try ( yeah right - easy for me to say) to relax and breathe and try to ride it like a wave. Hope you have a better day!

Yes, the uncertainty has been tough. Yesterday was a very good day. I had a few minor spasms but was able to sit up for a few periods. But now I'm expecting another bad day because I'm trying to track the patterns, but are there any patterns? No idea. I think the best I can do for now is just be grateful for the times where things calm down and I get a break, and hopefully they will be longer and more sustained.

One thing is that I am starving, but I'm so afraid to eat because I don't want a repeat of Thursday. I've been trying to do liquid meals but I wanna eat.

Try a soft boiled egg and a little toast, or rice in chicken broth. Just a little bit, for a semblance of normality. I just got over covid/nausea and eggs were all I could tolerate. Sympathies OP.

I hope you didn’t have a bad night and that you have been able to hold something down. It is really cold today in LA - I hope you are warm and settled down and can relax a bit today. I was worried about a bunch of “stuff” this morning - but I thought of you and your daily worries - hats off to you - I realized - I’m just fine. Have a good good day!

Hey OP, a bit worried about you. How are you doing?

Hey all-

I am, thankfully, on the mend. Still having some issues but it has improved by about 90%. Saw a new proctologist on Wednesday who prescribed a suppository that my insurance doesn't cover ($800!!!), so we're looking for an alternative and I have a feeling that once I get that medication, it will help even more.

I am definitely going to resume chemo on Wednesday.

Thank you for asking

Jesus christ OP is that suppository 18K gold?

90% OP, good to hear.

[quote]Saw a new proctologist on Wednesday who prescribed a suppository that my insurance doesn't cover ($800!!!), so we're looking for an alternative and I have a feeling that once I get that medication, it will help even more.

GoodRX is your friend. My mother's doctor recommended it for an expensive drug that she takes, and it worked out great. You could also probably get it cheaper from a Canadian pharmacy, but then you wait for shipping.

Yes, I found a coupon on GoodRx that reduces a smaller number of the suppositories (12) to $48 so I'm going to pick them up tomorrow. That's still $8 a day for this stuff, but I'm only getting a few instead of all 60 until I know they are going to help.

Back to chemo today. They gave me the private room so i could be in bed and not put any pressure on my rectum, which really helped. Weird thing was that when I got the Oxilplatin today, it caused a lot of inflammation in my rectum for about 90 min, along with itchiness and a runny nose. The last two happen every time, but this is the first time i'm had hemorrhoids while doing chemo.

My blood is in very good shape. Only one minor number is high, everything else is normal. But I got home, spiked a 102 fever and got bad chills so I'm on the couch under a blanket with the heat on. Took 4 Advil.

Hang in there OP. It sounds like things are going in the right direction with your numbers.

OP I just came across this thread today and read it from the beginning. I am so sorry for all you're going through. Please keep posting when you can. You have friends here.

Thank you!

OP, I am back after the site being on prime time for me for two months! I paid the $1.99 in the end. Love you, man.

Thank you. Feeling much better today. Wearing my pump, so I am couching it and watching movies and napping on the couch. I get the pump removed tomorrow and am looking forward to freedom and a long shower!

OP, I'm not sure how your pump is attached, or what other attachments you have, but I have a PICC line and at first it was very frustrating trying to shower without getting it wet. And then I went on Amazon and started searching and found this plastic waterproof bandage that comes in all different sizes. It sticks beautifully and STAYS on even when showering and nothing underneath gets wet. I get the PICC line dressing changed every week and one bandage manages to stay on and keep everything dry for that entire week.

If you're interested, it doesn't have an actual brand name but if you search Amazon for PICC line waterproof shower cover you'll find it buried in the results. If you have something on your body that needs waterproof covering this is the stuff (I think it's like the stuff they use to cover brand new tattoos?) Anyway, good luck to you, OP. I just had chemo round 4 yesterday. One (rough) day at a time.

Here;s a link, OP, and anybody else who might need this stuff. It's great!!

Done one chemo and a few radiations. Will prob need a picc line for the weekly chemo. Going to keep that bandage tip in mind. Dread doing chemo every week, that one session left me feeling sick for days. Glad you are doing better OP and finding solutions.

I will check it out. What I do when I get home from chemo is I wash my upper body with washcloths and hibiclens at the sink, then I get into the shower with my pump resting on a tv tray outside of the shower and the tubing all stretched out. I have a handheld shower head so I used that to wash the lower half of my body and my back, and a bath brush to scrub with. And my friend comes over right after to wash my hair in the kitchen sink. I installed another handheld shower head that I attach to the faucet for that.

After that, I can pretty much go a day without a shower until I get the pump out on Friday.

But thank you, R349. I wish you the best with your chemo. Let's all get through it together! And you, too, R351!

Oof, made the mistake of watching Spoiler Alert tonight and now I'm feeling all melancholy.

Well - um yeah - just don’t follow it up with Terms of Endearment! ….. Drown it out with a good dose of Seinfeld - or Mannix!

Mannix! I love it. I've always wanted to see an episode of that. I think I'll seek it out. : )

Mannix is fabulous! Great idea r354.

Besos, OP. I hope you sleep well tonight. Thanks so much for your updates.

Hi there - just checking in to see how you are doing this week. It is really cold in LA - -for us anyway - just hoping that you are comfortable and not battling fevers.

Hasn't it been cold? I have had my heat on and off. I sleep with it off because the prices have just gone through the roof for gas in LA this winter, but I put it on for a couple hours in the morning and at night when I'm on the couch.

I have been doing better, actually. I just wish my bowel movements would be back to being more regulated. I used to go once a day, if that. Now I'm going 20 min after I eat, every single time. And it's like I can't hold it, and when I go, it's a tiny bean most of the time. (sorry for the TMI.) But I think (I hope) that will regulate, also. And it's not that terrible a thing to have compared to what I was going through three weeks ago, when I wanted to be dead.

Chemo is in 2 days.

I will say (maybe because of all the weight I lost during the first two weeks of this) that I have been eating a lot more, and I have been craving sugar, which is BAD. I have got to get ahold of myself and knock that shit off before I start gaining weight. (Plus sugar is not good for cancer. It feeds it.) I might come on here when I feel the need for sugar and get you all to yell at me until I decide not to eat any! I know you dataloungers can do it!

Thanks for checking in. How are the rest of my chemo friends doing? Please feel free to post what's going on with you if you feel like it. Everyone has been so nice here, and I would be so happy to help anyone else going through this with a commiserative ear.

Thanks for reporting in, OP. Glad you're feeling better. It's true, sugar feeds cells including cancer cells, but stopping sugar doesn't necessarily stop cancer. What the research shows is that sugar contributes to depression. That's reason enough to curb it while you're feeling especially vulnerable during treatment and recovery. Here's the science...

Well I like to think that your pooping is healthy- babies and animals poop right after they eat.

I suppose you can indulge in fruit- at least that’s healthy. Try frozen red seedless grapes - like micro popsicles.

Coming down the backside of chemo round 4, by far the worst yet. Last week was a week of unadulterated hell. But it's starting to level off, and hopefully will only get better until I have to face chemo round 5, a week from Wednesday. Then just one more to go after that. I feel every bit of your agony, OP, it's not very different from mine. I spend every one of the last ten days wrapped up on a heated throw curled up in the recliner. Surprisingly, I slept more than I did during the other chemos, I guess that counts as a positive.

And the cold! It's been SO freaking cold in Los Angeles! I even mentioned it to the doctor and he agrees that the cold IS a contributing factor to my feeling so crappy. I'm sure the OP and others in he same boat as me will understand when I say I just want this sh*t over with no matter how or what.

R361, do you mind my asking what kind of cancer (or which chemo drugs you're on)? It sounds like we are on opposite chemo schedules, so your bad Wednesday is my good Wednesday. And my Wednesday is actually a 2 1/2 day thing. I'm at the clinic all day Wed getting infusion, and then I take the final drug home in a pump attached to my port. It drips into me for the next 48 hours and then I go back to the clinic on Friday midday to get the pump removed.

And if you don't feel comfortable saying, do not feel obligated.

Happy to come on here and (try to) cheer you or commiserate during your bad day(s). We can talk shit about the nurses. : )

R359, I know it won't help keep the cancer away, but I very much want to eat more healthily this time around than I did last time I had cancer. (And I agree about the depression thing.)

When I did chemo 7 years ago, my oncologist was awful, never gave me any guidance about what to eat and not to eat (and I asked) and I wound up eating a lot of starchy, bland food to stave off the nausea. I also ate a lot of sugar because I was craving it like crazy. And I got blood clots early on, so my exercise was curbed a bit. I wound up gaining 40 lbs in 6 months (which I subsequently lost).

This time around, I was doing really well, food-wise. I had maybe gained about 7 lbs since September, but that was more because I'd had to stop exercising at all due to first the really bad back pain, then the radiation proctitis. But since Christmas, the chocolate has been creeping back into my diet here and there. I hadn't had any sweets for two years.

Thankfully, last Thursday I got back on the treadmill for the first time in a month, and I'm back to where I was (maybe a couple lbs more) weight-wise before I got sick last summer due to my losing so much weight initially with the proctitis. So before I start going crazy with sugar, I have got to knock the shit off. I do not want to wake up four months from now with an extra 25 lbs on me. In fact, I'd love to lose 10 lbs. But if I get into the 200 lb range, I will flip the fuck out at myself. So starting today, no more shit food.

Now that I have been back at chemo after the proctitis calmed down enough (and until it is fully healed) I have been stopping solid foods midday Monday until I get home from chemo on Wednesday afternoon. I just do protein shakes from Monday night through Wed morning so that there's less of a chance I'll have spasms or the need to defecate at the clinic (which isn't easy when you're tethered to a pole for 5-7 hours.) I'd rather be hungry for a couple days than shit in public while having poison pumped into me.

Man, I am chatty today. Sorry!

Dr. Greger is firmly a plant-based guy but a lot of his videos are well-researched and cite sources (which you can look up and read yourself if you want to take a deeper dive). Just posting for any who may find it helpful. There are other videos on the channel specifically dealing with diet and cancer and diet and chemotherapy.

Thanks, R364!

No worries. I've found that getting leafy greens and cruciferous vegetables is actually delicious if it's done in a very good salad recipe (and all good salad recipes involve a good dressing). Maybe people with delicious recipes that involve cabbage, broccoli, brussels sprouts and various leafy greens could post?

I'll post one I love (you could cut down on the cheese but still use some and also throw in some kale, there's also comments below the video making more suggestions).

I love kale!

For the kale lovers... (kale is a green leafy AND cruciferous, so extra super healthy)

I am glad that you are feeling a little better! I have never gone through what you are going through - BUT - I am a champ at struggling with and slaying the sugar monster - these ideas are for when it gets stuck in your head and you wrestle to move on without sugar : A - Get two or three different jars of. Different types of pickles. The pungent taste of the pickles sort of flips something in the brain……B make some easy home made Chicken salad or Tuna Salad - home made so it doesn’t have sugar. When you crave sugar a small flavorful bowl should knock the sugar thoughts out. …C get some nuts (if you can digest them!) and sprinkle them with cinnamon….. Or enjoy some chocolate - you have been through the wringer! …… The LA super duper damp cold starts tomorrow. Stay well and Warm everybody!!,

Ooh, pickles. Great idea!

I am staying away from nuts until the proctitis issues are done completely, but I do usually enjoy them.

Oof, I just looked at the weather. Rain on Thursday for three days and very low temps (for LA). And I will likely have a fever on Wednesday, so I will be cranking up the heat!

I don't mind, OP. I just don't want to hijack your thread.

I have endometrial cancer and it's my own damn fault, If I'd jumped on it the moment I started having obvious symptoms (bleeding last January) I might be in a better place, but we thought it was something else because I have a history. I didn't get diagnosed until late August. And ended up with a Stage 3 diagnosis. The drug combo I get is called Carbo Taxol. I'm actually on three week schedule. And because I started with a very un-supportive doctor (now THERE is somebody to talk shit about!), I actually quit chemo halfway through. But then I changed doctors, got much better support and advice and restarted chemo with six weeks between round 3 and 4.

Chemo day itself isn't bad, it takes about three hours for the infusion and then I get to go home and ride out the side effects. And just like everyone said, each successive round has been worse. I seem to hit rock bottom around day 5 and then stay there until about day 12 before I start to claw my way out of the abyss. The brain fog is the worst - some days it feels like five minutes lasts a billion years.

Pickles!! That is so weird - last week a friend brought me some food and included were some deli salads like coleslaw and cucumber tomato salad and green bean salad - all dressed with the same basic vinegar dressing. Apparently my body was craving whatever enzyme or nutrient was in those salads because I practically inhaled them. Normally, I just mildly enjoy those sorts of salads. The human body's reactions are so weird.

R371, I am so sorry that you had a bad experience with your doctor, but I am very happy and relieved you had the foresight to switch doctors. When I had cancer the first time, I had the WORST oncologist. He treated me like garbage once I had decided to go into his care (when we interviewed him, he was completely different). He tried to bully me, he was indifferent to my concerns, visibly annoyed when I asked questions and tried to tell me I was crying wolf when I (correctly) thought I had a blood clot and then pretty much heckled me when he found out I was correct.

I also tried to switch doctors mid-way through. I interviewed with a doctor across the way who was prepared to take me on, and then mysteriously decided he could not treat me. I found out months later from another doctor that he and my oncologist used to work together and my oncologist convinced him not to take me on. Finally I just gritted my teeth and got through the treatment. And once I was in remission, I switched doctors for my maintenance care and have been much happier. I hated him. So good for you for getting away from your bad doctor. And if you ever want to tell your story about him, I am all ears.

Do NOT beat yourself up about not investigating more thoroughly sooner. We are not doctors and it's also entirely possible had you gone, a doctor would have told you the same thing you assumed. Doctors like to solve problems, and for most of them, solving problems means getting you to go away.

Here if you need me, and we'll get through this together.

🤒 Does the teledoc actually know you, or was he just a random hookup who makes housecalls?

Hey 371, I also have Stage 3 cancer, going through chemo/radiation now. Had I sought treatment earlier then my prognosis might have been better. 53% chance of dying within the next 2 years. Whatever I am going through with the treatment, and I am only really getting started, I keep coming back to that bleak survival stat. It all sucks so much.

OP here, R374. I know it's difficult, but you have to stop dwelling on the percentages, especially if you are just starting treatment. You have no idea how your body will react to the drugs and people with much less of a chance have made it through and are still here to tell the tale.

As both a cancer survivor and a current cancer patient, I know that the thought of dying creeps in very insidiously and uncontrollably. It is very easy to go down that path and get lost. I've done it many times. I still do it, but I also do my best to make myself stop thinking about it. It's really hard to stop sometimes (at least for me, and I imagine others who are facing this). But you cannot get mired in predicting your own death.

If you haven't done it yet, put a plan together. A will, final wishes, anything that you need to make sure gets done IF you go, and then don't think about it until the time actually comes where you have to. Because dwelling on what if and when and how much time does you no good at this stage.

I am Stage 4, because it's a metastasis. I know what the odds are of that, and I know that even if things continue to go well, as they have been, that I've probably only got a few years. That thought creeps in a lot, especially because I'm alone so much with my brain, which is always a bad thing, but you have to not give in to it. It's not about deluding yourself, it's about keeping the stress out of your body and mind so that you can be part of that 53% who does survive.

I was sort of stuck in a difficult place. Endometrial cancer is a subset of oncology and is treated by a gynecological oncologist, not just a regular oncologist. And most hospitals only have one on staff because there are so relatively few gynecological cancer cases. I'm with Kaiser and I got assigned to the one gynecological oncologist they had at my facility, Unfortunately she (yeah, she. You'd think a woman would understand better) had/has a very specific opinion of herself and what her patients should and shouldn't get and I didn't have the luxury of time to look for a different doctor at another Kaiser facility. Communication is her big problem - there simply isn't any. You meet with her at the appropriate time that she deems necessary and outside of that it's as if you don't exist. You can't imagine how many phone calls went days before being answered (by the nurse) if they ever got answered at all.

I was so fed up and disgusted with the frustration of trying to deal with her that I quit after the third round of chemo. But then I found out they brought on a second doctor to take some of the case load, and I reached out to him for one of my questions and got an answer and an appointment with him within a day, and communicating with him was a total 180 from her. We had a couple of long talks and he convinced me to continue chemo and made several suggestions and changes to the whole regimen that put me in a much better position. Things she never suggested. So I'm on chemo round four, the first one with him, and its going a whole lot better then the first three went. And we've still got a couple of other things to try that should make rounds 5 and 6 even more tolerable.

The odds are still not the best - I'm looking at a 67% survival rate at 5 years out. But that's such an abstract concept that I just don't think about it. I just want to get back to my normal routine and not feeling sick all the time. And then whatever happens, whenever it happens, will happen. I've done all I can to help the outcome, but ultimately its going to be out of my hands.

I agree the stats are informative and not definitive.

Just having a freak-out OP and you were correct to take me to task. It wasn’t my intent to be Debbie Downer. Maybe it comes with the territory. Yes one of the first things I did was update my will, write down my final wishes, and begin to get my house in order. But one bless in this cancer business is I feel as if I’ve been give a second chance with all my relationships. This time last year I felt very lonely. And now I get to meet new people every day!

R377, I don't get the idea that you are angry about it, but I honestly didn't mean to make it sound like I was taking you to task and I apologize profusely if I upset you at all. Tone in writing can be all over the place, and I meant it as encouraging. But I liked your message and am happy to hear you're making new connections. That's wonderful.

R376- My odds for going five years when I had my first bout with cancer (colon) were 65%. I went 6 years. I say this not to upset you, but to let you know that you have got to be diligent about all of your follow-ups and make sure that they figure out how to give you the scan or test that will most definitively tell you what's doing in your body post-chemo. I was given PET scans the first two years, then my (horrible) oncologist told me my insurance wouldn't cover them anymore. So I went to a new oncologist who got it pushed through for two more years. However, the PET scan only did from chest to thigh because colon cancer typically comes back in the liver and the lungs. Mone came back in the skull, where they never in 6 years bothered to scan because the odds were so minuscule. Mind you, they never NEVER mentioned that minuscule chance of coming back in the head, not one oncologist I ever spoke with. I feel this could have been taken care of much earlier had they just scanned me another 18 inches and kept it a PET, because by that point it had settled into some of my bones and that is frequently game over. CT scans don't pick up those hot spots, PETs do.

So you do your own research and ask tons of questions when the time comes. Be pro-active and be ready to jump ship for a third oncologist if it's necessary. Also see if you can find an online support group for people with your specific type of cancer. I am telling you, they know EVERYTHING and they want to help you. But 67% odds are actually very good and I think that you stand a fantastic chance of beating this.

Oh fuck, I've been home 2 hours from chemo and the chills and fever have already started. I have the heat on and I'm wearing a hoodie and under a blanket. Hopefully I can ride this out quickly. I might be back later, but right now I need to get as warm as possible.

Oh wow - and it is SO COLD out - really cold - getting colder in LA. I’m sure that you probably have an electric blanket or heating pad. In a pinch you can put a rice sock in the microwave. Sorry - I sound like “Sue Ann Nivens” - sending out good positive thoughts to OP & Co - I hope you all have a if not good - not awful night!

Keep checking your internal temp OP! And feel toasty soon.

Hoping all is well - it has been storming for hours - there is still more to come - plus blizzard events. I hope that you all are warm and have everything you need to power through the weekend.

OP, how are you today? Thinking of you.

OP? We're getting worried about you....

Oh, Dev, they’ve been poisoning me.

Hey All-

Sorry, just got back from chemo about 45 min ago. Doing okay. My numbers had dropped fairly badly in WBC and neutrophils, so last week I got a medication to inject in myself for four days. It brought my numbers up (according to today's bloodwork) but it also caused palpitations in my chest and back that were similar to an anxiety attack. They would come and go, and only happen when I'd gotten out of the chair and moved around and then sat back down. So I started taking xanax to see if that would calm them down. Yes, but it made me sleep a ton.

Thank you for the concern. I apologize for not being in better touch. I will come back on Friday to do the happy dance when I am one more chemo round finished!

xo

Thank you for the update OP. Stay warm and dry in this cold and soon to be rainy weather.

Only one more session OP, hang in there.

Thanks for checking in, OP. Good job on your chemo round and taking care of yourself. Stay cozy.

Hi OP - Was this week your last round of chemo? I hope that you are well. Happy St. Patrick’s Day!

Hey everyone. Been doing okay. Have been occupied with a bunch of scans over the past couple weeks. Did a CT, MRI and PET of both my brain and torso. I saw both oncologists on Friday. The news, thankfully, is promising.

The stuff in my lungs seems to be gone. The remainder of the tumor in my head has shrunk, and the mets in my bones have all gotten smaller. I am not out of the woods by any stretch of the imagination, and I know this is a respite, not a cure, but it's probably the best news we could have hoped for, and both doctors are very pleased and encouraged.

I am very happy with the news. It means I get a few more years, I think. At the very least, I can hold off on packing up my stuff for a little while. Not meaning to be facetious at all, but I've kind of been holding my breath on whether I had to start doing that so as not to leave it for friends afterwards (and make larger plans in general for now).

So we will continue with the chemo for five more doses and then at the end of May, we go back and do the scans over again to see where we are and figure out how to go from there. I'm taking nothing for granted, but I am super relieved. I felt like the treatments had been doing something, but you never know until you really get in there and see what's what.

How is everyone else doing who is going through this right now?

Happy to hear that. I wish you continued success in your treatment, OP. And to all the others in the same boat, as well.

Fibronose

Glad to hear this, OP - especially the clear lungs! It makes everything you endured worth it. And personally, I wouldn't worry too much about packing up your stuff. When my parents died, I found that suddenly things become categorized as the "Really Good Stuff" (their wedding rings, any really expensive jewelry or art, my father's valuable coin collection); the "Good Stuff": the Waterford pieces, the sterling silver, her Belleek pieces); the "Family/Sentimental Stuff": mostly photographs, signed/autographed books or photos/albums, some travel mementoes (my parents traveled extensively and brought back all manner of interesting little objects); a gorgeous tablecloth embroidered by my mother, etc) Once these are given or designated to family or friends, this is where you can kind of get off the bus, because next comes "Regular Stuff": furniture, chairs, cabinets, bookshelves, etc etc. Let your friends/heirs decide whether to keep/sell/donate these types of things. And finally comes "Yard Sale Stuff:" kitchen appliances, utensils, rugs, clothing, miscellany. You can hire a service to do an estate sale for you, but they tend to take a pretty hefty chunk. We had three yard sales on three successive weekends and made over $700 at each one. And that was 15 years ago. If you take care of categories 1-3 and designate a family member or close friend to take over from there, you'll be OK. Your time might be better spent sitting in the sunshine at a botanical garden or an art museum or some place you loved. Best wishes to you.

Wonderful, OP. Happy to hear you're feeling a little more balanced. Enjoy some weeks with no doctors or treatments.

. Not quite yet, R396. I still have ten weeks before I finish chemo. And this news is going to get me through it much easier!

But thank you! : )

Hi OP. That’s very good news. Well done. Heaven knows it’s an endurance test.

I’m finished radiation and having a break before 4 rounds of chemo. My oncologist wants to start me on weekly chemo then switch over to every three weeks. I don’t know what the difference will feel like. She says it has the same overall result at the end.

R398, have you asked what kind of side effects you can expect to experience with the chemo? Tell them you want to know everything possible so you are aware of what's normal. Also, do yourself a favor and keep a daily journal of any side effects you do experience, how long they last, etc. and just anything that seems out of the ordinary just in case, so you can bring it up with them. You think you're going to remember and you don't, so it's best to jot it down every day.

Let us know how it goes. And good luck!

Op - I know what you mean about the underlying anxiety of dealing with your “stuff” at the same time as dealing with yourself. …. My mom is 87 had a stroke 2weeks ago, has a necrotic hip and dementia. It is just us - no family and I have rented this house for the last 10 years - and money is tight. If / when we move - most likely it with be THE move - the LAST move. In years past packing up and moving was a new chapter - a new adventure. Packing up and disposing of a lot possessions is a little “too real” at this very moment. I can see it would be very difficult to be going through your stress - to have the pots and pans and lamps and skis on your mind!