DL Chemotherapy Club

Stay well, OP!

I didn't even wait for the hair to start falling out, I buzzed it off at home immediately after the first round of chemo. Then I shaved it with the same razor and foam I use for regular shaving. Was pretty easy.

One thing I miss about those days – no more dandruff! After a lifetime battling it, it disappeared for the duration of the chemo. Of course it came back afterwards and I do have it under control now, but I still miss those days of a perfectly smooth scalp.

I just used a mild face scrub every day to clean my scalp when I was hairless, made it really shiny and healthy-looking.

Sorry you're hurting, OP, but I bet you look sexy with the stubble. Hope you can find relief.

And by the way, the nurses recommended shaving it off when I was for the first round. They know what works!

Love to you OP.

I’m sorry you’re in club chemo as well, OP, and hope you’re bearing up as well as you can be.

I’ve been on chemo more or less constantly for 3.5 years; I’m stage four so it’s not curative but it’s been doing a good job containing it..but, man, it’s tough. I’m still recovering from Thursday’s blast and losing feeling in my fingers due to neuropathy, so whenever I scratch my head it feels like somebody else is scratching it.

Amazingly, I still have most of my hair even after around 40 chemo cycles. It did thin out a fair bit when I started the drugs and is still thinner than it was. I found it best just to buzz it really short. It’s soul crushing seeing clumps of hair on your pillow or in the sink. I do experience horrible dry skin, including on my scalp. It used to end up as sores and it was all I could do to stop picking at them. I use coal tar shampoo, T-Gel, it’s called in the UK, and find that soothes and helps. If your hair is cut really short it’s much easier to apply lotions to your scalp. My nurse prescribed a mild steroid liquid I could put on my scalp..I can’t for the life of me remember the name, but it helped and may be worth asking about.

Take it easy, OP, and hope you get through this smoothly and it leads to a complete recovery if possible.

What are chemo cycles? How does it work? How many times? Forgive my ignorance. I can’t imagine what you’re going through. It takes a lot of courage. I salute you.

Big kisses to you all for your kind wishes.

Thanks for the recommendations. My googling took me to twitter and Reddit where more than a few people remarked that they used sticky lint rollers to take out the stray hairs (!). For me, I feel, that will be a desperate last resort.

R2, you seem to have recovered? Yes!

R6, I can’t imagine what you have gone through. Huge hugs to you. I have had just one cycle and had a grade 4 rash so unexpected that I was discussed during grand rounds! I’d be happy to put up with rashes if it means beating the cancer, but they won’t risk it being worse. Hopefully my next cycle is more uneventful.

Chemo scalp rash seems to be pretty common; I have some ladies in my breast cancer group that have plenty of skin issues with their treatments. It may seem strange, but dabbing some diluted Listerine on the itchy areas can be very soothing (it's an old time treatment for dandruff as well).

Interesting that I had chemo radiation and my head hair didn't fall out, but all my body did, most has come back, but not all, my target site was very low, that may have had an effect.

I had very targeted radiation last year, a cycle on the left side of my head, and then one on the left side of my pelvis.

I noticed afterwards that the top half of my left sideburn had fallen out. Not the whole thing, just the top half. And then there was a swath of hair just above my ear that had all fallen out. I had fairly long hair at that point, so I didn't notice it immediately and it wasn't visible if my hair was down, only if I had it pulled back.

Then when I did the pelvic radiation, the left side of my pubes thinned out. Not totally bald, but I noticed a very different look between the left and right sides.

In terms of chemo, my hair thinned out, but not to the point where I needed to shave it bald. My haircutter was able to give me a good short cut that looked okay. I definitely could see shedding though before we did that. Lots of long hair around the apartment.

There's a great prescription shampoo. I don't remember the name but it was a distinctive red color. I shaved my head after round 1 and it came back curly. I hope you have all the support you need.

That’s interesting r12. After the initial regrowth did your hair remain curly?

R13 Nope curls eventually went away.

The constant headaches and bone pain in the week following a cycle do not respond to normal pain killers. I don’t even bother with the codeine prescription I received.

R15, you have bone cancer or bone metastasis?

I had scalp cancer and after surgery I didn't have this problem, OP.

Can I ask a question about chemo. My brother-in-law will face it. My sister is his principal caregiver. He's got some mild cognitive issues so his compliance with protocols is unreliable. My sister had a session and got an info sheet about exposure of caregivers to chemicals after chemo. She is freaking out she's somehow going to get poisoned. It's not rational. I read the sheet and it was simply a protocol for how to manage the reality. I think of tens of thousands of thousands of people getting chemo over the decades and I've never heard there were exposure risks (or of consequences from exposure risks) relating to caregivers. She is particularly freaked out by the specification to do laundry separately and right away. I understand her crazy because she's under enormous stress but I also think she's just wrong, almost as if her terror of chemo chemicals is a redirection of her feelings about the illness. I don't know. Any anecdotal anything would be welcome. I want to ease her suffering, but it's going to require her accepting she's got this wrong.

R18, the biggest concern is night sweats. The bodily fluids are a bit more charged with the residue from the medication. I've had nurses caution me against sleeping with partners in the same bed while I'm getting chemo. I can't speak for other bodily fluids (i.e. semen) but I would assume it was the same. I remember when I was doing chemo the first time, around 7 years ago, my sex drive was nil, but I would force myself to masturbate a couple times a few days after an infusion because I was worried poison was building up in my balls. (I don't know that was the case, but it worried me.)

I think your sister should be fine doing laundry. If your brother-in-law has bad night sweats, then she might use gloves when handling the soiled sheets, clothes, etc. And she might want to sleep in the guest room on the nights he has chemo.

All that being said, the exposure risk is still minimal.

Poison balls

Yes, that was what I was envisioning, R20. I know it sounds silly, but they do tell you that there are traces of the chemo in all your bodily fluids.

I am now taking oral chemo and they tell me to handle it with gloves.

A very shitty club to have to join, OP, but you're not alone and should get lots of good advice here. Keep checking in with us and let us know how you are doing, ok?

We are here for you!

Thank you r22, you’re a sweetheart.

Did anyone find that once starting chemo or radiation you had an almost permanent headache?

How are you doing, OP?

I’m so sorry OP…regarding the hair thing, I’ve had friends doing chemo and the hair loss may be inevitable, or not.

I’ve seen both.

OP, please check back in with us when you can.

We are pulling for you.

I took chemo pills and only had two infusion sessions. Is that not a normal option? I also didn't have any side effects (hair loss, nausea).

Anyone who is on chemo right now -- Merry Christmas, Happy Holidays. Hugs to you (if you're a hugger). Wishing you well. Wishing you comfort. Post here if you are having a hard time.

The effects don't show up immediately, it took two weeks for me to feel any discomfort.

R23 Yea, Like the brain had come loose and was rattling around in my skull. Only way to get through it all was to stay awake as long as possible by day and in the pm take a sleeping pill for some much needed oblivion. If lucky I got 8 hours. But then the nausea would start again.....20 years ago and I'd not wish it on my worst enemy. Look after yourself OP.

OP, I am sorry for what you're going through, but you will come out of it happier and healthier. Andree's Essential Soaps were formulated by their namesake specifically for people undergoing chemo, starting with her mother I believe. They have a shampoo and a face wash, pretty sure.

How hair reacts to chemo is very individual. My hair had been gradually turning salt and pepper prior to my first chemo. When hair started to fall out, what fell out was all of my "real" color, which was a rich dark brown with auburn highlights, leaving me only with thin gray hair. (And it was VERY fine). I never lost all of my hair, but it would describe it as thin and patchy When I finished chemo about 6 months later, my hair started to grow back in. Everything that grew back was dark brown, and all of my gray hair fell out over the next few months. For about a year, I had my original dark brown hair color. Then it started to gradually go salt and pepper again. One of my friends, who didn't know know about or understand my chemo journey, grabbed me one day, and said, "I'm so glad you've stopped dyeing your hair, and are letting it go gray, because I've decided that I'm not going to dye mine". I laughed and laughed. I said, "I'm pretty sure you don't want to use my method of getting back dark hair".

I have had three chemotherapy sessions for breast cancer. Doctor prescribed six in total. All by IV, not by pill.

OP, I hope you found relief for your scalp. I shaved my head after the first session, for it was coming out in clumps at the crown as well as the back. I wear a wig. I am not experiencing scalp itch or discomfort, thank God. I’m sorry I have no solution to offer you, tho.

R15, for the bone pain, please take Claritin. My beautiful nurses told me about this - no bone pain. The Claritin you shall take following the nurse’s administration of the white blood cell injector they attach to your arm to replenish your cell count. Take the Claritin as directed; but, I only need one dose and there is no bone pain.

For neuropathy, I use stress balls. It alleviates the numbness. For my feet, I soak them and walk as much as I can. Exercise helps a lot.

My fellow Chemo Club members, what do you do to ward off nausea? What do you eat? I want to share that eating watermelon has been a lifesaver in lessening the nausea; but, I wish I could rid myself of the nausea completely. It is a constant pest. Cottage cheese helps, too.

I am praying for each of you and sending love and positive thoughts your way.

My hair is growing back in fine, thin wisps. Naturally, my scant, scattered greys are growing back long, thick glossy. It looks ridiculous!

R33 did you wear a wig ever in regular life prior to breast cancer? A lot of women do these day for fashion.

Obviously a man buzzing his hair is nbd. I can’t fill up two hands with people I have told, and certainly none of my neighbours. Now that my hair is growing back in the state it is, I’m starting to get sympathetic looks.

I have Gin Gins candies for nausea. I also take them to chemo to take away the “taste” of the drug. It’s not bitter or unpleasant as such, but it does remind me a bit of petrol. If I can find young ginger at the grocery store that’s not too woody and dry, peeling and slicing a bit of raw ginger to chew on works as well.

As for a drink, I peel a lemon, remove the seeds, and put in a blender or NutriBullet with ice, water and lots of mint leaves. I guess it’s like a sugarless, pulpy mint lemonade. Very soothing to the stomach.

Hibiscus tea has been helping as well.

My heart goes out to each of you. I had a melanoma removed last year and a few days ago noticed some growths on my scalp that look like the photos I’ve seen of basal cell carcinoma. Have any of you had scalp surgery? How did your head look afterwards? Was there a bald spot and a noticeable scar, Seeing my dermatologist on the 23rd. Much love to all my fellow survivors.

Best of luck, r35, we’re pulling for you.

Sorry you’re all going through this. Have you thought about cbd or thc cream? Maybe it will numb the affected area?

Rooting for you to get better!

I had chemotherapy, but didn't lose any hair on my head. I did lose body hair at the site the radiation therapy was pointed at, though.

1 year post chemo and the neuropathy remains.