Help Please!

vinyl mattress pad, disposable sheets!, and diapers, what else is there besides sleeping in the bathtub? How horrible for you. Maybe you need some help - a nurse in the morning? or couldn't you go to a clinic for awhile. Hope you see some relief soon.

If you have not already contacted LiveStrong, I urge you to do so. They do a great job connecting cancer patients to resources and also help foster communities among patients. I learned about LiveStrong from a former boyfriend who died of cancer. Several of my relatives have since benefited from their resources. Good luck.

No advice, OP. Just wanted to say I'm sorry for what you're going thru and wish you luck.

My mom had control issues late in her life due to her cancer metastasizing to her spine. She had home health aides help her out, which you might want to look into. They put hospital absorbency pads down everywhere-in her bed and on any chairs she sat in. I'm sure you can find them on Amazon, they looked like the kind you put down to potty train your puppy. Sorry you are going through this.

Also, they had my mom take an anti-diarrheal after radiation, you should let your doctors know about your symptoms.

I can't offer advice, but just wanted to say I'm very sorry, and wish you a full recovery.

I agree with what R3 says, my mother went through similar cancer treatment and the large blue and white hospital pads that you keep under you are very helpful. Large enough to cover most of the bed in some cases. Good luck with everything, wish you a full recovery too.

Oops, R4

Lomotil is a very strong anti diarrhea med, OP. Hope you get some relief/answers

Have you tried Imodium in the meantime?

No advice, unfortunately, but I want to wish you a lot of strength for this very difficult time and a good recovery! Hang in there!

Wishing you a full recovery, Jimmcf. I well remember you from the "old days."

what about adult diapers?

R12, OP said he tried adult diapers, but they don't work.

@OP: Another vote here for imodium. Consult your doctor re: frequent dosing, as it is a very effective diarrhoea-stopper.

My second suggestion would be to consult a dietician specialised in foods for those receiving chemotherapy. Your gut bacteria got toasted because of the chemo, and you'll need to find means to replace them, but good old live yoghurt won't cut it for you (and it may well be harmful to you)

Last but not least, a big virtual hug. Thinking of you right now.

There's something called the BRAT diet (Bananas, Rice, Applesauce, Toast) that doctors often recommend for diarrhea problems. It's supposed to help calm your gut and firm things up a bit. There's plenty of info online.

Thank you all. I do take Imodium (they have me take that when it happens) and diphenoxylateatrop 4x a day.

Those massive hospital pads are a great idea.

Thanks guys.

Mom used those pads when she had cancer and they worked wonders. She also had some bath sheet sized towels under the pads, so she didn't have to clean sheets so often.

2/10. Points for diarrhea.

Thanks for the towel idea R16. I can honestly say my mind is not all there these days.

And thank you to PattiFan (who I believe stayed at my place years ago) and all the others who just offered support.

Jimmcf, when I had cancer, I was given a prescription for Oxycodone, which eased pain & helped with sleep, also, I was given Benadryl with chemo to relax me. I'm so sorry for the terrible experience you're going through, all my best wishes for you.

DL is sending it's thoughts and prayers.

Who gets your stuff?

I’m very sorry. Many people here do care about each other, and about you. Here’s to better days.

Best wishes for a full recovery.

Are you planning on making a corporeal donation for the good of science? I hear there's this highly-regarded research facility in Arizona. There's extra points if you're well-hung.

My heart goes out to you OP.

Hope it gets easier for you, OP!

Lots of love, OP. I hope things get better for you. ❤

Very sorry to hear this OP. Behind out cold exterior area bunch of people with a heart. I hope you find a system that works for you while you battle this cancer.

Not a problem, Jimny @ R18.

Towels are the best. I used mom's towel idea when I had a bad virus and kept one on the couch, too. Best idea ever.

You can get plastic mattress covers as well, but with pads and/or towels you probably don't need them.

Good luck, OP.

Hi OP-

Wishing you all the best with this. Cancer survivor here. It's a tough road but you can do it. Found a lot of support on here when I was going through it so I hope that you will continue to reach out if you need to talk.

LOL *Jimmy, not Jimny

OP, I use these with my elderly mother, who also suffers from fecal incontinence:

GORILLA GRIP Slip-Resistant Leak Proof Mattress Pad Protector (52x34)

They work very, very well and since they're washable, they're cheaper than the disposables. Plus they're thicker and don't shift around on the bed or bunch up underneath you the way disposables can. You can find them on Amazon.

Best of luck to you.

Sending you love, OP. I have stage 4 cancer and was told that I'd be dead in two years. That was 5 years ago and my cancer is dormant because I got treated very aggressively with chemo. It sucks. Big time. But hopefully it will help and 3 or 4 months after you've completed your last treatment, you will start to feel normal again. My advice is to do whatever you have to do to get through it without shame. I remember I shit my pants in Target at the end of the chemo cycle. Try to be peaceful. And rely on whoever is willing to help.

Thank you for the Gorilla Grip recommendation; I just ordered one (the largest size) and if works will get more.

I knew I was going to get some genuine help, and I thank you all. I am stage 3/4 - it is contained in one area that makes it stage 3, but it is so massive it is stage 4. I had a doctor (who my insurance won’t use) tell me there are only about 6 surgeons in the county (including him) that he would consider able to do the surgery properly. Thanks for spending $700 for that (I am in NJ, he is in NY).

I do have both OxyContin and fentanyl patches to help with the pain (I think I need to upgrade to a higher strength fentanyl) as the damn thing is killing now (so did take some OxyContin but waiting to kick in)).

And thank you for the mattress pads suggestions

I have no useful ideas so hopefully I can put a smile on your face with a joke instead.

Sleep in one of these with plastic on the floor and you are good to go.

I haven't read all the replies. First, OP, I am so sorry you are going through this! Given your health situation, I would not take any OTC medication or change your diet to manage the diarrhea without a doctor's direction (or ask a nurse who knows your situation). I understand your desperation for answers, but DL is not the place. There is bad advice on this thread (i.e., BRAT). The pads that people are talking about are called chucks.

R36 here again. I am a nurse but not a chemo nurse so I am very hesitant to give definitive information. I reread your post. Keep in mind that diarrhea is the body's response to something. It is often the body's attempt to rid itself of toxins, viruses, and bacteria. Though it might seem normal, your body might be responding appropriately to the chemo therapy, which always entails the destruction of many healthy cells. Again speak to your doctor, any nurse familiar with you care about what is going on, the physical, emotional and spiritual toll it is taking and what can be done about these issues.

sorry man all good wishes for you

Okay, R35, you made me laugh. I hope you made Jimmy laugh too.

Jimmy, I, too, remember you from the old days. Hang in there, not in the R35 sense, and this too shall pass and all the other sayings you are so tired of hearing. I'm glad the DLers could help. We are always here for some decent, caring suggestions along with the random abuse and porn because that's how we roll.

I have no advise, OP, beyond what's been already offered. I just wanted to send my warmest regards. I went through chemo in the 90s and it sucked. Funny, that's all I remember about it. How awful it was. None of the detail. Hear's to you making a full recovery!

OP, best of luck. Hang in there.

I wish there was a way to get in touch, OP. My mom's in hospice care right now and we have a stockade of chux(the disposable pads) in a closet. She was getting them regularly due to having a stroke and now hospice provides them for us.

Does anyone know a way I would be able to get in touch with OP?

Sending you love OP. I remember you from older days of DL as I’ve been here 20 years. Many well wishes and continue your updates to us.

If you're taking pain meds, ask if it is possible to switch to something with codeine. Codeine causes constipation in most people. In you, it probably won't stop your bowel movements, but it might make them firmer and easier to detect.

I'm going to bed, but if there's any way I can help out getting those bed pads to you, OP, let me know. I lost my dad to colon cancer, so I know how that crap is.

Hang in there, OP.

EST (elaborate scat troll) — that most horrifying of troll acronym portmanteaus!

All kidding aside though OP, there are all sorts of products to help manage your problems.

I’ll come wipe your bum, OP. I’ll even talc it for you. It’ll cost though. x

We love you, OP. (((((((((((((((((HEALING VIBES)))))))))))))))))))

Standing ovation for the thread posters - good people.

Stay strong, OP! Props for posting using your authenticated screen name. Please keep us apprised of your condition and progress as you continue to recover. xo

R36 - I wasn’t going to take any medical advice - I know better than that. I was looking more along the lines of pads, etc - which you guys of course came through for.

And for the person asking to get in touch with me, my email is Jimmcf@aol.com.

I know I type old with that email. I don’t give a shit. I’m 52.

r52 Ask the doctor if you can take psyllium powder in between taking your medication. It works wonders both for constipation and diarrhea as it bulks up in the intestines so those episodes won't be as bad as they are now.

No advice, just sending support. Long time cancer survivor here, wishing you all the best. Rest and sleep is your friend. And some edibles might help with your symptoms (oh I guess that's advice of some sort)

Bless you OP, sending you all good thoughts. Before you take anything over the counter ask the doctor. And are you allowed to eat fiber? I take Metamucil and that gives your stool some bulk and helps you maintain a balance. That liquified stool is horrible. I know. Take care.

I have nothing to add, other than my sincere wishes for you regaining good health, OP. I went through cancer 14 years ago. You’re not alone in this. Thanks for giving us the opportunity to lend our support.

Dealt with cancer with my dad and he used those pads. I had surgery on my leg a couple of years ago and had to use them myself. They work!

Cost saving tip, order the pet ones, not the people ones, you'll save a small fortune. They're exactly the same product at very different price points.

The more you know, the less you spend and the more you have for candy and gum. And rent boys.

Thoughts and prayers, OP!

Just kidding. I sincerely hope you find a solution and everything turns out okay.

Have you tried weed? When I used to smoke like an industrial incinerator I never, ever had a problematic bowel movement, Taco Bell be damned. Once a day, 60 seconds tops, and I'm good for 24 hours.

Please also keep in mind that if you're on Oxy regularly, it also has a constipation effect (though I guess it's not really kicking in for you). However, if you go through bouts of it as opposed to it being an everyday thing, you should absolutely be careful before taking anything else that would bind you up.

Wishing you lots of luck, OP. You are going thru what many of us will go thru at some point in our lives. Keep coming here for laughs and questionable advice. .

I wanted to thank everyone for their help. I am just out of the hospital for a couple of days due to pneumonia. I am scheduled for surgery in a month for removal.

The diarrhea unfortunately is still a major problem.

R61/OP, I hope your surgery goes well, and you update us. You've got to be very strong to have endured what you've already endured. I hope you let us know how your surgery goes (once you've had some time to recuperate).

Best wishes, OP!!

Hang in there!

Jimmycf, I too remember you from days gone by. I'm so sorry to hear of your illness. I have no experience with cancer or chemo, but I just wanted to let you know that there are people here that knew you when and we're all pulling for you.

Please keep us updated on your surgery as it appeoaches, Jimmy.

We are all sending you good thoughts and hoping everything goes well.

All opiates (codeine, fentanyl, morphine, oxy) can cause serious constipation but OP's bowel cancer is overriding this.

Just an awful situation, but lots of love to a brave OP.

OP, I also have cancer and have posted on here, and I have been beyond touched at the helpful and kind responses. It is heartwarming to see people rise to the occasion.

Might it help to get a colonoscopy bag, just so you don't have to deal with the mess? I don't know what getting one would entail, but it might help alleviate some anxiety?

I wish you the best of luck and health, and hope your doctors find a way to get the problem under control, and that the chemo helps shrink the tumor.

OP you are a brave man. You are a courageous man. You will prevail over this

A neighbor had what you had a few years back, maybe 12 years ago. He went through chemo and then they removed the tumor and later the effected kidney to be safe. He's been fine ever since. Good luck.

Thank you everyone for your kind comments.

Was not feeling great last week and went to ER, and I have pneumonia. I’m off the antibiotics now, and decided to stop the chemo, and of course no diarrhea. If anything I can’t remember when I last went - it’s not painful, but I just haven’t gone in a few days. And that little hospital visit put me over my “maximum out of pocket” for the year, so it’s all free now (but I paid $10K).

I’m having the surgery on 9/23 (I would have had to stop the chemo 2 weeks before, so just doing a little earlier). I’ve had other surgeries in the past (leg, neck) but this is the first one I am worried about (it will be 6+ hours and as Blanche would say, I’ll be open “stem to stern”). I know it is because I am at a much better place in my life (loving partner, job I love, dog I love, and not giving a fuck what people say). Ideally, they will cut and lift, but it is everywhere (including the vena cava) so that is very unlikely.

Again, thank you all for your support. As a long time DL’er, it means a lot.

Thinking of you Jimmcf. I hope the surgery goes off without a hitch, and you come out of it feeing positive and in good spirits. Beaming supportive, healing vibes your way. Please update us when you can.

We are with you Jimmcf, hang tight.

Thinking of you today, and wishing you luck!

I skipped to the end so I don't know what kind of advice you got. I can't give advice for the effect of chemo, but I know about everything else from taking care of my mom. here is what learned.

Waterproof sheets to protect mattress. You don't want to sleep directly on them, they're too hot. Next a large bed pad to serve as a protective barrier. Over that a cotton sheet. I would buy cheap bottom sheets at target and ikea. Next another large bed pad directly under you if it isn't uncomfortable and bunching up. I had a bunch of bottom sheets. so changing sheets is limited to just one sheet,or bed pad... quick and easy. And when she had a baaaaaad accident, I threw out the sheet. Everything went in the garbage.

Also i tried every brand of adult diapers and the only ones that worked were Depends Night time. I kept those on my mom 24 hours a day. I ordered them from Amazon because they were hard to find in stores.

Last I would buy cheap cotton washcloths in bulk from amazon. 100 per bag. And used those instead of toilet paper and then just threw them away. I know it sounds wasteful. It's so hard on your asshole to have diahrea multiple times a day, it ends up being worth the pennies being tossed out, just for the gentle softness.

I'm sorry you are going through this, and I pray you get some relief.

Let us know you're ok, Jimmy, when you feel up to it.

Hope everything went well in surgery!

Dear OP, I hope you get better each day. Unfortunately, I have suffered with a different problem but same results, the humiliation of literally shitting the bed. May I also suggest the big disposable hospital pads? In my experience, the best bowel incontinence pants come from Sam's club, store brand. You can also purchase bulk baby wipes there. You can line the adult diapers with a large sanitary pad if needed. I recommend a soothing baby ointment for your ass and finally, a diaper genie which will keep your bathroom from smelling foul. Good luck and keep us posted. Wishing you well.

Sending love, OP. I hope everything went well with your surgery.

OP’s surgery was today, wasn’t it? He’s probably pretty drugged-up right now.

Wishing you well, OP.

OP I wish you peace and healing. Please know your DL lunatics are here for you. Take care,

Immodium and try to get an Rx for Lomotil. Best wishes.

(((((((((HEALING Vibes)))))))))

Thinking of you today Jimmy and wishing you all the best during your recovery. ❤️

Hope your surgery went well. Please let us know how your are !

Bumping for the DL supportive yet bitchy brigade to help our guy through this shit (literally and figuratively)

so sorry to hear OP!

How does one get Kidney cancer?

Wishing you all the best!

OP, please check in, or have a friend check in. We are concerned and curious to know how you are doing. Or, if you popped your clogs, we need to know which one of us gets your stuff.

I've been thinking of you too, Jimmy.

Me, too. Oh oops, I was imagining Lesbo’s R88 crotch to be very smelly and disgusting. I thought what a cunt snatch whore bitch.

Assuming the OP is not a troll, I have this question: WHY would anyone come to a gay gossip site for medical advice? Go to a DOCTOR. Go to a support group for people who have the same trouble. But why in hell to come to a gossip site for medical "advice" from strangers?

Hoping the surgery was a success, OP, and that your healing process is as speedy and painless as possible!

No one likes you, r90

R90 He wasn’t asking for “medical advice” like what you’d get from a physician but advice on how to deal with a side effect of treatment that people here might have had experience with. So ease up.

I hope OP is doing well. Let us know how you are OP.

Should I email the asshole and chew him out? Or should I email the asshole and express concern? OR should I email the asshole (likely the asshole's executor at this point) and demand our stuff? We would have to split it 66 ways, so that would be roughly 1.42 percent of stuff for each poster.

Can you tell I'm fucking bored?

I am tempted to give him a hard time just for shits (heh) and giggles.

it would be nice to know if he's okay but something tells me he isn't.

Thanks for the love guys.

I am home now, slowly recovering. The surgery unfortunately did not go as planned; after they opened me up the found that the cancer “was like concrete” and most likely if they tried to remove it I would not survive (I guess when they tried to pick it up my whole body went with it). I was in the hospital for a few days and have been taking it easy at home, although I do need to head to work soon. The pain can still be pretty intense, but I do have painkillers to help. And I am still tired all the time.

As for the next step, I honestly don’t know. I go see the oncologist in a couple of weeks and imagine we will talk about it then. I am trying not to put the cart before the horse and think I will never be cancer free, but I’ve just got to take it one day at a time. I imagine it will be different chemo, which of course fills me with dread.

Really thank you for your support guys. It means a lot.

Sorry to hear, OP. Take good care of yourself and gather all the support you have around you. Post here, reach out to friends, look for positive resources that can help - support groups, services for those with life-threatening illnesses and the like.

don't give up. they made so many strives in treatment. I just saw an ad yesterday where they are starting to leave chemo behind because they have come up with so many alternatives. People are also living very long lives with cancer. just hang in there.

Sorry to hear it Jimmy, but for what it's worth I had two elderly relatives who lived with inoperable cancer for several years, and treatments are even more advanced now, plus you're younger. Nothing is set in stone yet. For peace of mind maybe see if you can get into the oncologist a little sooner. Take care.

Good luck to you and my best wishes for a full recovery.

I’m sorry, OP. You sound a lot braver than I could ever be. I hope you can get some relief from the pain and further therapy with fewer side effects.

Healing thoughts and energy to you, OP.

I am a physician and advances in treatment are developing rapidly: utilising the body's own system in adjuvant treatments. (It's thought that we all have cancer cells that the body's immune system deftly addresses.)

Also there is a field of psychoneuroimmunology that encourages the mind-emotion-body connection. Studies show that corporeal aspects can be impacted by meditation, breathing exercises and other non-invasive techniques. If you are open to pursing further information regarding this field in cancer treatment, PNI (PsychoNeuroImmunology) may be very helpful.

Lastly, "Radical Remission" is a relatively recent book which compiles stories of individuals with situations such as yourself. It is encouraging. There is astonishing documented evidence of folks with inoperable cancer who have gone into remission via a variety of treatments and methods. So know that it IS possible (and there are many examples in the book), to heal significant cancer into remission.

OP, your story makes my trip down Chemo Lane sound like a Sondheim musical. Best wishes. You are in my thoughts...

God bless you, Jimmy. You've been very brave through so much. God bless.

Sending you lots of love and healing vibes.

Op, kudos to you for being so stoical and strong. You're an inspiration, man - so brave. ❤❤❤

This Instagram is run by a 36 yr old called Deborah James, who has been living with Stage 4 Bowel Cancer for about two years now, and has stabilised thanks to new treatments at the Marsden Hospital in London. I think you might find some reassurance in her posts.

Thanks guys.

Stay rested and keep positive, OP. Easier said than done I know, but you’ve gotten this far. Wishing you a speedy and full recovery. x

So sorry to hear that, OP. Hope the oncologist has a workable plan for you.

We love you, Jimm. May God keep you strong.

I'm so sorry to hear about that. I also have cancer which will be fatal. I was on chemo, but it did not work, so they stopped it. I start an experiential drug this week, but, chances are, it also won't work.

I will be dead in a matter of months. I don't want to linger or be dependent on anyone, so I plan euthanasia. I don't mean to be morbid, but maybe you might want to think about how you will die. Exit International and the Peaceful Pill Handbook might be helpful. Again, I'm sorry.

r112 don't be too quick to end it.

Many times the chemo interferes with your pancreas ability to create the digestive enzymes needed and it just flows as it were. Ask your doctor about pancreait. Those enzymes cured the problem for me.

OP I wish I lived near you so I could come over and mow your lawn or take you out to lunch. Clean your house, take you to appointments, whatever. Sending hugs instead.

I did go to the oncologist today. Next plan will be IV auto immune therapy with 2 different drugs. They will take about 4 hours at a time to administer. One will be every 4 weeks, the other every 2. It’s goal is to try and soften the tumor (it’s like concrete now, which is why they could not remove surgically).

Of course there are tons of side effects. As the doctor said “your toes will be ok.”

I am still out of work as the pain is still pretty bad and I tire extremely easy. The nurse said I should most likely be able to work while doing this.

It’s nice to hear from you, Jimmcf. It sounds like at least you’ve got a plan going forward. Hang in there buddy, we’re rooting for you.

So, you have a new plan, that's a good thing. When will you start? Hope you won't get side effects, I'll keep my fingers crossed for you.

Did your doctor give you something else to manage the pain?

I really hope that you become well again, Jim. I wish I had more to say. We love you, pal.

Stay strong, Jim! Stay positive! Attitude is everything!

R118 - he upped the fentanyl patch and I got a refill of the oxycodone. I have to go for another MRI, CT scan etc before we start.

And thank you guys for your support. It helps a lot.

Hey, Jimm! Wanted to chim in and send you a big hug and lots of love mixed with good thoughts.

Are you eating? A nutritionist with a background in oncology can be very helpful. A lot of hospitals have auxiliary staff who assist oncology patients. Please reach out if you need their assistance.

I'm glad you have a new plan to tackle the cancer Jimm. My MIL has had inoperable lung cancer for almost ten years now and is still going strong. They just adjust her chemo when the side effects get too rough, or stop it for a while. She's lived so long that other med have come on the scene that she can use (gene therapy ones for eg).

Huge hugs and the best of luck to you. xx

The shit troll strikes again, this time with a new low.

For those asking sincerely, I really appreciate it.

I went today for my first immunotherapy; they are using Opdivo and Yervoy to try and soften the tumor. I’m actually feeling ok - it was just a long time there (over 5 hours). So the goal is to now try and soften and then try the surgery a second time to remove.

It does seem endless and that there really isn’t a finish line, but I am sure that is also my depression talking.

OP, that is a promising combination of drugs you are on there. Immunotherapy is the biggest development in cancer treatment since chemotherapy and it has so far been shown to work best on solid tumour cancers like yours. There are also ongoing trials of different combinations of drugs and new developments almost monthly.

Keep yourself informed. Read up on the latest trials, results and therapies. Keep eating as often as you can (it is extremely important to keep your weight up as much as possible) and know that a stranger in Canada is wishing you all the best.

Thanks for letting us know, OP. You have my sincere best wishes for success with the immunotherapy and another surgery.

Hi OP, hope you’re staying strong! If you’re still experiencing a lot of diarrhea, ask your doctor about Opium Tincture. My mom has been on it for years since going through chemo and bowel surgery - the only thing that has ever worked has been Opium Tincture. Just a little bit and it helps slow her bowels to the point where she is not losing it. But, as the nurse above said, be weary because most often it’s your body trying to rid itself of something. She’s had c.dif a few times too and with that, you definitely want to get it all out of you as soon as possible.

Good luck to you, OP. I have Stage 4 colon cancer and my current and second SOC chemo regimen seems to be failing, so I have been looking into clinical trials and met with an onc at Penn Medicine about doing an Opidivo + Yervoy trial. He recommended against it for me for the time being—not enough data about how well it works for my particular cancer and tumor biology—but I hope it works out for you. I know it's been remarkably successful for some cancers; in fact I got excited about it after hearing the story of a woman with Stage 4 melanoma who went into complete remission within a few months of starting Opdivo and Yervoy.

BTW, I use Lomotil for diarrhea and it works very well, but I have never had issues of the severity you describe.

(((((((((((((((((((Sending more loving and healing vibes))))))))))))))))))

I also wanted to recommend Aquaphor if you’re experiencing rashes or discomfort back there. It acts as a barrier to protect the skin. Apply generously before bedtime and as needed.

Dear Jimm, many times true, unconditional understanding comes from "strangers". Please know that this stranger here is beaming you support, strength and love.

R128 - I have tried the opium tincture (not covered by insurance of course). Did not really help. Thankfully, these days the diarrhea comes and goes - it’s not all the time like when I originally posted.

Glad you have found a bit of relief Jimm.

Hope you’re seeing some good results and turn a corner soon. Also I hope your general well-being is as good as it can be at the moment. Hugs to you.

R129 Stranger here, but one who wants to encourage you to get, if you can, multiple opinions (from medical professionals) and to do as much reading and keeping yourself updated as you are able.

I don't know how it works in the US with insurance etc. but I do know that immunotherapy is very expensive and that people who are technically eligible for it have been discouraged due to costs (in a non-US, universal healthcare country). I'm not being political and I love universal healthcare. Just encouraging everyone to advocate for themselves and ask questions. Doctors are not infallible and you have the right to question them.

Oh and good luck. Hope I didn't seem patronizing.

You can take lomotil or immodium. Please talk to your doctor first before you do.

[quote] [R129] Stranger here, but one who wants to encourage you to get, if you can, multiple opinions (from medical professionals) and to do as much reading and keeping yourself updated as you are able.

Thanks, r135, I don't think you sound patronizing, but believe me, I am already doing the above. I am always joking that I need a cancer secretary because it's like a full-time job.

Here in the US, immunotherapy pretty much works like this. If you qualify for a clinical trial, the trial sponsors pay for the drugs, their administration, and I think usually the scans, labs, etc. needed to determine whether the trial is working. You/your insurance pays only for visits to the oncologist for check-ups between treatments.

If you're not in a trial but want to try an immunotherapy drug off-label, and it's been FDA-approved for other cancers (but not yours), it is apparently not that hard to get the pharmaceutical company to provide it free of charge for "compassionate use."

Thanks for letting us know how you're doing, Jimmy!

It's scary hearing how solid the mass is! I hope the drugs help to soften it up so it can be removed soon.

Please do something nice for yourself. Take in a movie, go to a nice dinner, buy some good books or get a massage if you're able to any of those things. A little self kindness can go a long way.

We are all rooting for you and hoping you recover. Please keep us posted on your progress.

And to everyone else here with serious illness - do something kind for yourself. Please .

In an ideal world, those of us who've experienced this disease would get a Cancer Concierge who would keep track of appointments, research alternative therapies and remedies for side effects, and navigate insurance for us. In the real world there's the internet and internet friends.

We're pulling for you, Jimm.

Jimmy, I feel for you. I don’t have any suggestions, but I’m rooting for you.

R140 - exactly. I have trouble keeping track, especially with my brain a bit mushy these days.

I don’t know if I’m in a clinical trial - the oncologist was just like this is what we’re going to try next. When I was on chemo, the retail price for 2 weeks of pills was about $27,000; Blue Cross/Blue Shield paid $22,000 (And approved me for a years worth). It’s just mind boggling.

You'd know if you were on a clinical trial, Jimmy, because you would have had to sign a zillion-page consent form. Your doctor is probably getting you the Yervoy off-label, and I believe Opdivo is already FDA-approved for kidney cancers, which is great, as it must have demonstrated success in trials.

And, yeah, the price of all these cancer drugs—immunotherapy, chemo, and otherwise—is staggering. Without insurance, I'd be millions of dollars in debt right now, or dead—probably the latter, since most docs won't treat you without insurance or a cash payment upfront.

R140, totally agree with your Cancer Concierge idea. That would be fantastic. Unfortunately, you mostly have to be your own concierge.

How are you doing OP?

I'm stage 4 OP. My advice is to get the best oncologist that you can afford and live like you're living, not in fear of dying.

Best wishes and kind regards to all of you currently going through medical troubles. I can't even imagine what it's like to deal with all that. I would probably lose my mind.

Best wishes and kind regards to all of you currently going through medical troubles. I can't even imagine what it's like to deal with all that. I would probably lose my mind.

Best wishes OP. I hope you find physical and spiritual relief.

OP -- I have terminal cancer. Chemo didn't work, and then I was on a trial drug that also did not work. I start immunotherapy next week, but it will only be once every three weeks, so I suspect the doctors don't have much hope, but feel they need to do something. The worst side effects I had from chemo and the trial drug were a slight brain fuzziness, and -- worse -- dry skin and cracked fingers, which made it difficult to use my hands. it was a nightmare. What kind of side effects should I expect with the immunotherapy? Did you have many? And, like everyone else on here, I am wishing you the absolute best.

This lady has stage 4 bowel cancer and is currently writing about her immunotherapy treatment here. She lost her eyesight temporarily. Scary stuff.

I have my immunotherapy every three weeks, I don’t think it indicates we are worse off (I am stage 4 too). I had my second one yesterday. For me it has been fine compared to the chemo. You feel the effects a few days later - what’s a little more fatigue? I will let you know the middle of next week if it’s any worse.

Block out a large chunk of time for it. First I go to the lab to draw blood, then see the doctor who is always at least an hour behind. I am on 2 different drugs - Yeravoy is an hour, wait 1/2 hour, then do Optivo for 90 min. I was there from 12-6 (Same previous time).

Brain fuzziness- have not heard that term before but that is exactly it.

Being overweight has been an issue all my life; I am now at the other end where I need to gain weight. It is doing my head in. I try and eat, and eat things that used to be forbidden, but just can’t. I guess this is a good week as I only lost 1 lb. I have lost so much they are saying they may not be able to treat me. I’ve lost so much you can feel the cancer protruding from my body. Everyone is surprised how hard it is - the doctors couldn’t remove saying it was like concrete.

I want to thank all you guys for your support. And R149 we are in this together.

And I know I still type fat

I wish I lived near you, OP. I’d come over and make you chicken soup and mow your lawn. ❤️

[quote] I have lost so much they are saying they may not be able to treat me.

Have you tried drinking Ensure? Can they give you TPN if it comes to that?

[quote] I have lost so much they are saying they may not be able to treat me.

Have you tried drinking Ensure? Can they give you TPN if it comes to that?

R149 here. I am, regrettably, quite used to spending the entire day at the hospital. When I was taking the trial drug, I would often get there at about 7 AM, and sometimes not leave until 6 PM. I bring a book with me, and sleep while they are giving me the infusion. My first immunotherapy is this week. Thanks for letting me know what to expect. I, too, always have to wait for the doctor after I get blood drawn, but I have discovered that it is not because the doctor is running late. Rather, they need to see the results of the blood before they can release the infusion, and they might add some vitamins to correct deficiencies in your blood. I had to have magnesium added the last few times. I am thankful that my doctors are wonderful, but I absolutely hate spending the day at the hospital.

I am sorry that you are having such a hard time with it. Although I am completely accepting of my fate, it is still a lot to have to deal with. I don't tell my friends about what is going on, because they all feel like they have to do something, and treat me like I'm a dead man walking. Despite that fact that I will be dead pretty soon, I don't want to be treated differently; that just reminds me that I am sick, and it is nice to sometimes forget.

I wish you the best of luck and comfort, OP.

I have no advice, but want to wish you all the best, OP.

Best of luck op and r149

R149 I’ve heard many say that being a cancer patient is a full-time job. Wishing you and OP the best.

R151 - hang in. A friend is stage 4 going to immunotherapy for 4 years with no worsening of symptoms. Same schedule - every three weeks. Doctors all said 4 years ago that in 5 years something newer and better would be available. Never give up!

How are you doing today, Jim?

I just want to say to Jim and the others fighting: I love you bitches.

I wish I could do something to help, or even just be there to hang out. I wish I could send an entire football team to walk naked around your house and cheer you up!

Who on EARTH FF'd our OP?

OP how about trying an inflatable bed too, there is no absorbent mattress. HSN sells them and you can pay if off.

R161 - I’m doing ok today; yesterday not so much (the after effects with immunotherapy are not immediate; they take a few days). I work as an office manager at a vet office, and my boss sold it so I am worried about my job (and putting in enough hours to be full time. They have a 30 hr minimum whereas previously it had been 25).

Anyway, I often feel completely overwhelmed and alone (which I know I’m not - my boyfriend has been terrific). And it’s great with the Russian roulette of the diarrhea (my original question). It doesn’t happen for a week or more and then bam! (Like last night).

Anyway I do want to truly thank you for your posts, replies and keeping this thread alive. It means a lot to me.

how's it going OP? I hoe you had a good holiday.

Anotber member of the cancer club here, sending you love and light.

OP are you still here? if so how are you doing?

Hi OP. Let us know how you’re doing.

Hi OP,

Would love an update, but I figure if you were up to giving us one, then you would. How's that for a subtle hint without being too much of a dick about it?

This stranger and his husband are thinking of you. He's sending you love, loogies, and a miner's helmet or "However that saying goes". (He's from Grand Rapids, so, um...you know...). I'm sending you cozy, mellow vibes, (because I'm from Marin, so, um...you know...).

You may well be sleeping, but if you are up and bored, I'll be around for a while if you feel like a chat or some company.

By the way, do you prefer Jim or Jimmy or...? I've never been quite sure. Oh god, that last sentence sort of sums me up in general.

Warm thoughts to you OP!

I was called Jimmy growing up (parents and relatives still use) and Jim as an adult. I will respond of course to either.

I’ve been having a rough couple of days (that old uncontrollable diarrhea is back and I have to wear diapers). I have finished my four rounds of immunotherapy, and go next week for the MRI and scans. The goal was to shrink or at least soften the cancer. It still feels pretty firm to me, but what do I know?

The depression is hitting me pretty hard; I love my boyfriend, my dog and my family and friends, but I can be open here: I feel I am just ready (and wouldn’t mind) to die. It just seems so endless and I am having a real difficulty keeping sane with all the doctors appointments, how my absences are affecting my job, even just taking care of Mason (my dog) seems like insurmountable some days. I know others have it far worse, but a lot of people have it far better.

It’s a very bad thought to have (and not going to act on it), but in a month and a half I will have 10 years of sobriety, and I can’t help but think - this is the life I got sober for?!

Sorry for the depression, Jim. I don't know why our current culture demands that depression is not normal and always needs to be cured. You have cancer. That's pretty fucking depressing. You have ample permission to feel depressed. It is what it is. Hoping you find some moments of relief.

I remember you from the old days too. Thanks for keeping us updated. Sending you all good vibes.

First and foremost, Jim I know you quite well as a DLer for over 15 years. I am so sorry with what you're dealing with.

To those that don't understand that DL is a community of mostly gay men and women where we take care of each other or try to? Leave this site. This site has helped me though hell and back. So many times.

Back to Jim. Are you able to find any joy? A good TV show to watch? A family member to chat with? A pet to love?

I'm sober too. Don't drink. It won't help. But maybe CBD? That might ease the pain? I don't think that counts at this point.

The pain is on and off; I have fentanyl patches I need to change every three days. I had some bad reaction with the ambien I had taken for years with the fentanyl, so I stopped the ambien. And I do have oxycodone as needed.

I do have a chocolate Labrador, Mason who I love dearly but some days it is tough to walk him. Plus he pulls like a tractor on crack.

I do watch a lot of tv (not ashamed to say “Love Island”), reading and I need to lay down a lot.

Thank you guys for your kind words - I remember you too Josh. This place used to have the best tea and snark (Star and Big Gay Al threads still crack me up thinking of them).

And Josh I hope I’m not really wanting to drink. Part of the problem is you can’t really be open to your loved ones. Whenever you say something mildly negative they take it as “you don’t love me enough to fight this.” So you just keep it in, at least for the forseeable future - it’s not worth the fight and/or backlash.

Jimmcf, don't drink, if only because it will probably make the diarrhea worse. Speaking of which, it's counterintuitive, but Metamucil helps some people with diarrhea because it bulks up the watery stool. (See link below.)

As a fellow Stage 4 cancer patient, I totally get your depression. I'm having a surgery next month that has some small potential to be curative but probably won't be. And after two years of chemo, 3 previous major surgeries, and more doctor visits that I can begin to count, I'm fucking sick and tired of cancer as a full-time job and of never knowing what medical disaster awaits me next. I've no desire to leave my friends, family and old, normal life, but often go through spells of thinking that death would be preferable to more of the bullshit I'm living with now.

Here's hoping we can both get through this shit and put it behind us.

Forgot to post the Metamucil link; here it is:

You get me R178

May God give you both peace

R178 - I had surgery in September but the cancer was hard as a rock and everywhere. We are trying to shrink or at least soften before taking another crack at it.

Good luck to you, Jim. I hope the immunotherapy is working and will make you operable.

My surgery next month is also sort of a second attempt/redo of a surgery that failed. Having a tumor removed from my abdominal wall; pretty nervous about what else they might find in there that didn't show up on scans, but we'll see.

That was r178 above.

I am on the fifth day of this horrible diarrhea being back and am at my wits end.

Hang in there, Jimmy!

Lots of love for you here.

Sending love and hugs to you. This community is amazing when someone is in need. Whaddya know, pointless bitchery and love can exist in the same space!

I can hear the misery and frustration in your post Jim. Lots of love to your sweet, exhausted, miserable self. I wish I could do something, anything, to ease this hell you are going through. Vibes on full beam for the diarrhea to fuck right off. I'm assuming you have heard just about every suggestion from friends, family, doctors and Google for something to stop it or at the very least slow it down, and likely don't want any more input in that department. If I am wrong, say the word, and hopefully your DL team here can help come up with more ideas. Besos, you dear man.

Hi Jim. Thinking of you, and hoping you are getting/were able to get some good sleep.

What r187 and r188 said.

Wrapping you up in a protective hug.

Oxycodone causes constipation. Ask your doc to prescribe. I know this b/c of 3 orthopedic surgeries I had recently. My problem was preventing constipation caused by the oxy. This may work in your favor.

Thank you R190. I actually do have ovycodone and it doesn’t slow this down at all.

And I know some of us lament how DL “used to be” - but you guys have shown it still is.

Thinking of you Jim...

You could always invite Erna for a sleepover.

Hey Jim, don't feel like you have to "come to the phone". Just know we are all beaming support your way.

Why is Jim’s thread greyed out? Is he a scar troll or a renal cancer patient?

Hoping that all is as well as can be, Jim. Best to you.

Hi Jim. Sending warm thoughts from my bunker.

Hey, Jim, hope you are still around and doing okay.

Hey, Jim, hope you are still with us and feeling well.

^^^ Ditto.

I think I am going to email Jimmy. I'm scared it won't be good news, but waiting to hear anything at all is more upsetting. He doesn't know me from a can of peas, but well, sometimes strangers make the best friends and all that.

Why has this thread been grayed out?

Because some people are assholes, or they are on their phones and go to hit the WW and end up hitting FF

Not grayed out for me -- turn up your settings to asbestos eyeballs and see if that helps.

Thanks, R205. I hope OP is ok.

Anything, R202?

OP, can you please update us on how you're doing?

r207 I haven't yet. My gut tells me it isn't good news. He's never been this quiet for so long.

Go ahead and send him our love, 202. Maybe he’s just feeling discouraged.

Why is the original post lined out?

R211 ?? Mine isn't...

R211 See R205 for instructions.

R202 Any word from OP?

OP, I was on the same two immune therapy drugs you are taking (Opdivo and Yervoy) for metastatic melanoma . I had it in vertebrae, lung, knee and a lump under my arm. All internal nothing on my skin! I got an all clear right b4 this last xmas. The Yervoy is NO JOKE. I didn't have the GI issues your having but my stomach was always upset and there is just no relief from feeling miserable. But the more treatment you have the less prominent are the side effects . I still do a 30 min infusion of Opdivo every 4 weeks for maintenance. Immune therapy can and does work. Sending prayers for your full recovery.

The Opdivo/Yervoy combo has worked miracles for many melanoma patients, r215. Glad to hear you are one of them! Sadly, I don't think it's been very successful so far in patients with GI cancers. I hope Jim is doing fine and just not visiting DL much these days, but I'm kind of afraid to find out.

Jim? Hello?

OK, I keep saying I'm going to get the balls up to email, and I don't and I feel shitty about that. I will do it tomorrow. Does anyone want to toss in some wishes/thoughts? Or should I just mention the gang at DL is thinking about him?

Thanks, r218.

Just tell him I love him and think of him every day, and we miss him.

Thank you R218. Hope he's okay.

OK, emailed. Fingers crossed everyone!

FWIW, I did a cursory name check and there's no you-know-what, so that could be a good sign.

Thanks, r221. Good thoughts to Jim; I hope he's well and just not hanging out on DL.

More cheese. More fiber.

Hey everyone, sorry to say still no reply. I even re-sent a different email it in case some of my "saltier" language ("bitches", clutch those pearls!) got filtered out by his aol account.

Assuming I have the right accounts, and I think I do, his fb and twitter posts seem to have ended about the same time as his last post here. No obit found, but still.

Jesus...what if he had been enduring all that only for fucking Rona to snatch him?

My postive thoughts are starting to move to the negative...or realistic I guess.

Shout out to Jim, wherever you are.

R225, thanks.

Well, if we can't find any other info, I suppose we have to say farewell to Jim. I feel strange taking this thread off of watch, and not ready to do so. Mary! I know, whatever. I need some fucking magical thinking I guess.

I feel bad for bumping this thread with my own moaning when it might mean someone got their hopes up. Sorry.

I just caught up with this thread, and I'm hoping Jim is still around. I don't think I could take another DLer gone- for those who don't know, we had a really terrific DLer lose his battle with tongue cancer, which was chronicled here for 2 years.

I appreciate your efforts, r229. You done good. Thanks.