Very low-stakes question about capecitabine (Xeloda) and hair loss

Posted by jk77 @jk77, Nov 16, 2023

Hello. I'll soon start IMRT (intensity-modulated radiation therapy) plus capecitabine (oral chemo) for my pancreatic cancer. (Earlier this year I had 8 infusions of FOLFIRINOX before surgery, and then a Whipple that didn't quite get all the cancer.)

My question is about hair loss from capecitabine: Does anyone have a sense of how likely it is? I know that everyone has a different response to every chemo drug, but there might be stats about what % of patients on capecitabine lose hair, and maybe stats on how extensive that hair loss is.
. . . . . . . As noted, this is a low-stakes question, but it would help me to know whether more hair loss is coming -- if it is, then I'll get a pixie cut now. (I'd rather not wear a wig, and I look awful in most headgear for women with cancer bc I have a bottom-heavy face. I lost at least 50% of my hair during IV chemo; what remained was long enough for me to pull back into a tiny bun and clip it in place, and I won't be able to do that if I lose more.)

Also: If anyone wants to share other experiences with this combo (IMRT + capecitabine), I'd be grateful. (I'll post a slightly different version of this question in the pancreatic cancer forum, given that this combo is, I think, tailored to p.c. patients.)

Apologies if this seems tone-deaf when so many are dealing with truly life-changing side effects, and thanks.

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

markymarkfl | @markymarkfl | Nov 18, 2023

@jk77 , I'm not sure if your insurance will cover it, but there's a push to get more of them to provide ice caps that can be worn during administration of the chemo. Similar to the use of ice to prevent neuropathy, the theory is that if ice constricts the blood vessels while chemo is at its peak flow, it reduces delivery to the hair as well. Of course this may be more difficult with an oral chemo if you can't ice your head 24/7.

Other options may be available, and you could ask a hair loss specialist doctor for details.

1) Laser helmets -- supposedly low frequency red light improves blood flow to the scalp. You can order them off the internet or have a doctor prescribe an expensive one. But since chemo works by killing fast-growing cells, and you'll have a pretty constant flow of chemo with an oral pill (if taken daily), it might actually increase the delivery of chemo to hair cells and kill more of them.

2) Low-dose oral Minoxidil... Same chemical Rogaine was built from. After all these years, some genius figured out you don't have to put it on your scalp. Just put it in pill form in a much lower dose than you would for its traditional blood pressure use (vasodilation), and it will grow hair on the scalp but not so much on the rest of the body. But you might also have the same counterproductive scenario of actually delivering more chemo to the scalp and accelerating the hair loss.

I wish I had more to offer, but maybe taking the above questions and thoughts to a hair loss specialist will spark some ideas that lead to a better solution.

As always, wishing you the best!

--mm

kevinmonroemi | @kevinmonroemi | Nov 25, 2023

I was on it along with xeloda for 7 months for pancreatic neuroendocrine tumors and never lost my hair I don’t thing it a common side effect.

iloveruby8 | @iloveruby8 | Nov 26, 2023

I just started on Xeloda. This will be my second two week treatment. I found that My hair has stopped falling out. I was on afinator previously and I lost understanding about 50% of my hair but now it seems to have stopped so I’ll know more in the next next few months but I do use Rogaine and I have used Rogaine for years and it does help retain the hair

lisag03 | @lisag03 | Nov 27, 2023

I was on xeloda plus oxiliplatin so not sure which one caused it, but I lost a decent amount of hair thickness wise. If I had to guess, it was most likely the oxiliplatin that caused the hair loss. I only did xeloda for two months and I also had a lot going on surgery wise. I lost a lot of hair while going through multiple surgeries and just being so sick for a long time.

seathink | @seathink | Nov 28, 2023

I lost all my hair from IV chemos and then did a year of xeloda.

The xeloda didn't prevent it from growing back and I did not notice any thinning from how it was pre-treatment.

Hope this helps!

jk77 | @jk77 | Nov 28, 2023

@markymarkfl @kevinmonroemi @iloveruby8 @lisag03 @seathink

Thank you so much! You've all been very helpful, and I really appreciate your taking the time to share your ideas and experiences. Wishing all of you well.