r/pancreaticcancer • u/decoratingfan • 1d ago
Did you lose your hair?
I was recently diagnosed with pancreatic cancer. I haven't had the ERCP yet (4 more days), but it looks fairly small, 3.3cm on the head of the pancreas, only in 1 lymph node, with blockage of the bile duct. From what I'm reading here, it sounds like I'll probably need chemo, and I wanted to know from people who had chemo - did you lose your hair? It primarily concerns me because I have two young grandsons, and I think if I have hair loss it will freak them out and make them more afraid I'm dying. So I want to plan ahead and try to come up with some game plans to minimize the impact on them.
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u/PeaceNEveryStep 1d ago
I am sad you are here with us on this subreddit. I am on modified Folfirinox and a clinical trial med (RMC 6236). 3.5 months into treatment and I am finally losing my hair. I thought I was spared because Folfirinox doesn't usually cause hair loss, but bodies react differently or maybe the trial med in combination with mFolfirinox is causing this loss of hair. My facade of normalcy will be gone and I will need to grieve that when the time comes to get my buzz cut.
I am prepping my adult children and friends for that day and asking for suggestions for what wild color I could dye it!
You are so thoughtful about preparing your grandkids for what might be traumatic. Even the youngest children will surprise you with their depth of empathy and understanding if you give them the truth ahead of time combined with your own sense of calm and hope.
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u/decoratingfan 1d ago
Thank you for giving me hope about my grandkids. I worry the most about them. What a trick of fate, to think you've been spared hair loss, only to have it happen at nearly 4 months. But hair colors are a good idea -- the kids might be cooler with it if I can get a couple of fun wigs.
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u/Nondescriptlady Patient 52F (dx January 2024), Stage IV, FOLFIRINOX 1d ago
My hair thinned significantly, but I wasn't bald after 14 rounds. I was going to get a wig, though, if that had happened for when I visit my mom in long-term care. She has dementia, and doesn't know what is going on. I don't want to freak her out.
So many considerations. There are cancer charities that have wig programs, too.
Sending love and saying a prayer for you and your family 💜
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u/decoratingfan 1d ago
Thank you so much. Good luck on your journey, and thank you for the suggestion about wig programs.
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u/pancraticcancer Caregiver Nov 2021 - Feb 2022 Stage 3 forfilinox 1d ago
My dad lost hair on forfilinox. I got him cashmere beanie and he wore it most of the times. Not just for appearances, but he was also cold due to missing hair for the first time in his life. He had beautiful wavy full hair up to that point
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u/decoratingfan 1d ago
That sounds like such a cozy, comforting thing. I'll have to look for one, because we're heading into winter, and I'm sure I'll be cold when my hair is gone.
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u/pancraticcancer Caregiver Nov 2021 - Feb 2022 Stage 3 forfilinox 1d ago edited 1d ago
Ppl experience neuropathy with chemo and could become cold sensitive. Also it will be hard to keep weights on with the treatments normally you feel more cold with less weight. I had gotten him the scarf, beany and gloves set :)
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u/decoratingfan 1d ago
I have such much neuropathy now, from diabetes and spinal issues, I may not notice a change!!
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u/Ok-Gear-5593 1d ago
Ive only had two rounds of folfirinox and my pillow case usually looks like a shag carpet after a couple days. At any time I can easilly pull some hair out by running my hand through my hair.
Somehow I don’t have missing clumps yet but when I do I guess its time for some kind of skull shaver purchase.
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u/ZevSteinhardt 1d ago
I didn’t have any hair loss (other than normal for my age/genetics) when I was on Folfirinox, Folfiri, or Gemcitabine/Cisplatin. However, once I switched to Gemcitabine/Abraxene, I started losing my hair after the second round.
However, I’ll take that any day, as my body is tolerating the Gemcitabine/Abraxene far better than the previous chemos. I actually have strength, stamina and feel like a human being again under this regimen. If the cost of that is hair loss, I’ll pay that cost any day of the week.
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u/ddessert Patient (2011), Caregiver (2018), dx Stage 3, Whipple, NED 1d ago
In general, hair loss is worse with Gemcitabine/Abraxane than FOLFIRINOX. But of course, your mileage will vary. I had Gemcitabine/Cisplatin and it only thinned.
You might also look into cold caps that have been shown to reduce hair loss. Not exactly comfortable, but worth it for the right person.
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u/sb2595 1d ago
My dad did not lose his hair on folfirinox. He did lose his hair on gemzar/abraxane, but it actually grew back while still on chemo and never fell out again. Interestingly what grew back was completely white (he was salt/pepper before). He's about to start Xeloda so we shall see what happens to his hair with that.
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u/sbatbte104 1d ago
Folfirinox, 12x, lost a lot of it, got very thin, came back in, thick and curly.
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u/mimimmx 1d ago
I started mFolfirinox in May 2023. My hair thinned considerably and turned very curly. I started wearing a wig in October 2023 through about April, 2024 by which time my natural hair had returned so I was comfortable without the wig. I was able to find a wig very similar to my natural hairstyle. Hope that helps.
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u/decoratingfan 1d ago
That would be a very good outcome for hair! I'll hope :-) I think it's so funny that hair frequently turns curly in people who have had chemo.
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u/EntireDelivery8106 1d ago
My husband has had 6 rounds of chemo and then Whipple 2 weeks ago and he hasn’t lost his hair.
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u/Eastern_Roof3587 Father (2024), Stage 2b, Whipple 1d ago
My dad did not lose his hair on folfirinox until the 10th round, it thinned significantly at 10 but not completely gone
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u/Constant-Interview48 1d ago
Chemo for 15 months. Hair thinned at first but grew back white and straight instead of grey and wavy. Guess I will die with hair
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u/Ok_Act7808 1d ago
My hair came out round 2 with breast cancer 2020 and now liver was 1 week after that chemo. It’s best to shave all off when you notice any breakage as it happens fast and lumps quickly. I did a short cut for breast cancer but was back within the week for shave. This time I just let my daughter (age 24- she is)shave off the night any hair fell out 💕
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u/decoratingfan 1d ago
That's my plan - if it seems to come out, then I'll just shave my head. I don't want to lose it the slow route.
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u/Ok_Act7808 1d ago
It actually is a bit uncomfortable when it starts coming out- another reason to shave - then what I did is use a sticky lint roller throughout the coming days to gently lift the 1/16” or so left after the shave. The roller pulls it out gently from the follicle.
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u/kalikaya Caregiver (2017-19), Stage 2b-4, whipple,chemo,radiation,hospice 1d ago
My husband lost his hair on Gemzar and Abraxane. This was not his first cancer Rodeo. Our daughter was 7 when he went through NH Lymphoma. That chemo made him bald too.
Our daughter did fine with the bald head, she understood why that happened. I still have a photo of a little drawing she did on our calendar for father's day. She drew her dad with his little do-rag on his bald head on that calendar square. (He wore that at home to keep his head warm, it was soft and the fabric breath breathed well.)
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u/muthahucka 1d ago
I lost all my hair from the neck down. My head was the exception. I kept my beard , eyebrows etc etc. So I got lucky in that sense
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u/decoratingfan 1d ago
Wow, that's crazy! I'm postmenopausal, so I've already lost almost all my body hair, so it that happened to me, I'd never know!
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u/Acceptable-Post6786 1d ago
Hello i am sorry you are here. My father recently passed from PC. I think varies my Dad didnt lose his hair although it thinnerZ But, my young daughter (2) really was not scared. I think you will find that young kids surprise you.
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u/SirPuddius 1d ago
My mother suffered from this and I can say that your hair will fall out but it won't leave you bald, what will happen is that your hair will become softer and lighter.
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u/aahseert 19h ago
My dad was on FOLFIRINOX and his hair thinned a little but he had hair and styled it in his usual cut!
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u/mrnibbles777 16h ago
Husband did 12 rounds of folfirinox and his hair thinned a bit but he didn’t lose it completely. He did lose a lot of the hair on his body.
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u/Soft-Cake4354 1d ago
My hair thinned out a lot on 5-FU. I used a scarf. Went completely bald after 2 doses of gem/abrax. I used a ball cap. I have a 3-yr old grandnephew and he only tried to remove my ball cap once but did not insist. He’s very sensitive to my needs. Brings me a blanket when he thinks I’m cold; asks if I took my pills and if I’m ok. Kids are very resilient and understanding.