Pancreatic Cancer Group: Introduce yourself and connect with others

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

@markymarkfl

Sorry to hear it, but that's about right on schedule for Abraxane. I wouldn't expect the hair to begin returning until after you stop.

In my case, a few gray whiskers remain, but the healthier, faster-growing black hairs are all gone.

We reduced the Abraxane dose by 15% during two treatments in January, and then I missed a treatment in February due to Covid. During that period, some of the black hairs slowly started to reappear. The most aggressive hair for me came back in the nostrils, lol... my scalp got jealous. But within a month of resuming treatment at the full dose, everything is gone again.

You might try some steps to help preserve the hair on your scalp, or at least assist/maintain the vitality of follicles. On the scalp, you could try an ice cap during during chemo, and a red laser helmet afterward. After chemo, you could try "LDOM" (low-dose oral minoxidil), which has been getting a lot of attention recently in the general hair-restoration business. Be sure to investigate interaction with your chemo drugs first. You could also apply topical minoxidil (Rogaine) to the scalp and eyebrows, and you could also try Latisse to help the eyelashes and maybe the brows.

The drug in LDOM is a vasodilator -- opens up blood vessels. I have often wondered if vasodilators and blood thinners would help chemo penetrate deeper into pancreatic tumors and make chemo more effective. That would be a good research study some day. But a quick google search last year raised some concerns for me about mixing minoxidil with Gemcitabine, Abraxane, or Cisplatin. I don't remember which one or how serious the interactions were. Those would be important questions to ask an oncology pharmacist about if you want to go that route.

I'm not overly self-conscious about the Mr. Clean look, but it's not what I'm used to after growing my first mustache almost 50 years ago. I've shaved my head a few times since my hippy days, so that doesn't shock me either. It's the missing eyebrows that throw me off a bit when I look in a mirror... makes me want to wear a cap or eyeglasses to distract from that. I would recommend anyone who's about to start Abraxane take some pictures of where your natural eyebrows are, and if you're really concerned, consider an eyebrow microblading treatment or something like that before you start.

The overall chemo regimen also tends to make your skin hypersensitive to sunlight. Nobody wants melanoma or any skin cancer for that matter, but the risk might be elevated while on chemo. (ATM mutation also seems to increase risk of melanoma.)

I'm used to being tan, and staying out of the sun takes some effort. The ultra-white scalp sometimes makes me think I look like a neo-Nazi skinhead. Not often, but sometimes... Funny thing about wearing a beanie cap is that people think I'm hiding my bald head because of the cancer, which is usually not the case. The chemo drugs also tend to cause anemia and a tendency to feel cold, so I'm just wearing the beanie to stay warm most of the time.

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Thank you for your response. Are you able to wear sun screen on your head and let it tan a little?

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Thanks for sharing! Did you wear a wig or scarf?

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@marciak9

Hello
I just had My fourth round of Gemcitabine with Abraxane, After two rounds, all my hair fell out. Anybody know if and when it might grow back. I didn’t lose it during Folfirinox treatment last year.

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Marcia, I had 44 treatments with Gemcitabine & Abraxane. My hair fell out after the second round. I stopped chemo at the end of Dec. 2023 and have hair growing back now. It has been growing/coming in for about 2 months. I kind of look like Bernie Sanders/Christopher Lloyd (back to the future) but only with fuzz. It is very interesting to watch how it is coming back! I can say that there are a few places I did not need it to come back like legs, underarms! I did get my eyebrows & eyelashes coming back too! Yeah!
I am a 74-year-old female who had baby fine & thin hair before it went away 🙂

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@beckyshops

Hi,
I was diagnosed on March 21st after going to the ER with Jaundice. What a shock. I'm a lifelong "pretty healthy" person and never would have guessed this kind of diagnosis. So far, I've had good news in this journey and am hopeful for a Whipple surgery after 3 months of chemo, with the mass at the head of the pancreas and no lymph nodes or signs in other areas appearing affected.
I start chemo treatments tomorrow and am concerned about what I can do to avoid neuropathy. None of the "big cancer hospitals" are promoting cold therapy for mouth/hands/feet, but other GI cancer discussion groups and some small test groups have seen it successful. Anyone dealt with tring to do this?

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My suggestion is to have the Whipple Operation as soon as possible! You need all the strength you can get, I have had friends who have been driven down the chemo path to never regain enough strength for the Whipple surgery.
My Whipple was done back in 2013, neither my gastroenterologist or Whipple surgeon gave chemo a second thought & I’m glad they didn’t.
Been looking at stage 1 Pancreatic cancer in the rear view mirror ever since.
Gods Speed..

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@marciak9

Hello
I just had My fourth round of Gemcitabine with Abraxane, After two rounds, all my hair fell out. Anybody know if and when it might grow back. I didn’t lose it during Folfirinox treatment last year.

Jump to this post

Sorry to hear it, but that's about right on schedule for Abraxane. I wouldn't expect the hair to begin returning until after you stop.

In my case, a few gray whiskers remain, but the healthier, faster-growing black hairs are all gone.

We reduced the Abraxane dose by 15% during two treatments in January, and then I missed a treatment in February due to Covid. During that period, some of the black hairs slowly started to reappear. The most aggressive hair for me came back in the nostrils, lol... my scalp got jealous. But within a month of resuming treatment at the full dose, everything is gone again.

You might try some steps to help preserve the hair on your scalp, or at least assist/maintain the vitality of follicles. On the scalp, you could try an ice cap during during chemo, and a red laser helmet afterward. After chemo, you could try "LDOM" (low-dose oral minoxidil), which has been getting a lot of attention recently in the general hair-restoration business. Be sure to investigate interaction with your chemo drugs first. You could also apply topical minoxidil (Rogaine) to the scalp and eyebrows, and you could also try Latisse to help the eyelashes and maybe the brows.

The drug in LDOM is a vasodilator -- opens up blood vessels. I have often wondered if vasodilators and blood thinners would help chemo penetrate deeper into pancreatic tumors and make chemo more effective. That would be a good research study some day. But a quick google search last year raised some concerns for me about mixing minoxidil with Gemcitabine, Abraxane, or Cisplatin. I don't remember which one or how serious the interactions were. Those would be important questions to ask an oncology pharmacist about if you want to go that route.

I'm not overly self-conscious about the Mr. Clean look, but it's not what I'm used to after growing my first mustache almost 50 years ago. I've shaved my head a few times since my hippy days, so that doesn't shock me either. It's the missing eyebrows that throw me off a bit when I look in a mirror... makes me want to wear a cap or eyeglasses to distract from that. I would recommend anyone who's about to start Abraxane take some pictures of where your natural eyebrows are, and if you're really concerned, consider an eyebrow microblading treatment or something like that before you start.

The overall chemo regimen also tends to make your skin hypersensitive to sunlight. Nobody wants melanoma or any skin cancer for that matter, but the risk might be elevated while on chemo. (ATM mutation also seems to increase risk of melanoma.)

I'm used to being tan, and staying out of the sun takes some effort. The ultra-white scalp sometimes makes me think I look like a neo-Nazi skinhead. Not often, but sometimes... Funny thing about wearing a beanie cap is that people think I'm hiding my bald head because of the cancer, which is usually not the case. The chemo drugs also tend to cause anemia and a tendency to feel cold, so I'm just wearing the beanie to stay warm most of the time.

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@markymarkfl

@rbaum123 , I'm very sorry to hear about your mom. Delays are almost never good in cancer treatment. There may still be some treatment options, but it definitely depends on what your mom wants to do, just how weak/frail she actually is, and what medical centers she has access to. I fully understand and respect any well-informed decision not to treat as well. Wishing you both all the best.

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Thank you very much. Both surgeon and oncologist said that the spread was already there when she was first diagnosed it just didn’t show in scan until they opened her. We started at Columbia medical center in NYC first ahd than transferred to NYU. Each decision we made after getting at least three opinions from different oncologists from other hospitals

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@rbaum123

Hi. I joined for my mother who is 84 and was diagnosed with pancreatic cancer in June of last year. In the beginning we were very hopeful and optimistic because we were told that the cancer is in the tail and the tumor is very small. We were planning a surgery but somehow it took three months before the surgery was scheduled and when the surgeon opened her up he discovered a spread to liver and basically just closed her up. The oncologist did not want to do chemo because my mom is not strong enough to go throw it. So basically there are no treatment options for my mom. Her symptoms so far are abdominal and back pain and weight loss. I do the best I can by reading about her diagnoses and participating in groups with this disease where everyone shares helpful information. This is how I learned about soursop, celery juice and hot lemon water as detox. I would appreciate any advice. Thank you

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@rbaum123 , I'm very sorry to hear about your mom. Delays are almost never good in cancer treatment. There may still be some treatment options, but it definitely depends on what your mom wants to do, just how weak/frail she actually is, and what medical centers she has access to. I fully understand and respect any well-informed decision not to treat as well. Wishing you both all the best.

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Hello
I just had My fourth round of Gemcitabine with Abraxane, After two rounds, all my hair fell out. Anybody know if and when it might grow back. I didn’t lose it during Folfirinox treatment last year.

REPLY

Hi. I joined for my mother who is 84 and was diagnosed with pancreatic cancer in June of last year. In the beginning we were very hopeful and optimistic because we were told that the cancer is in the tail and the tumor is very small. We were planning a surgery but somehow it took three months before the surgery was scheduled and when the surgeon opened her up he discovered a spread to liver and basically just closed her up. The oncologist did not want to do chemo because my mom is not strong enough to go throw it. So basically there are no treatment options for my mom. Her symptoms so far are abdominal and back pain and weight loss. I do the best I can by reading about her diagnoses and participating in groups with this disease where everyone shares helpful information. This is how I learned about soursop, celery juice and hot lemon water as detox. I would appreciate any advice. Thank you

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@markymarkfl

It depends somewhat on which chemo recipe you're getting. If you're getting Folfirinox, the ingredient Oxaliplatin is pretty notorious for causing both neuropathy and cold sensitivity (two different things). The cold sensitivity usually goes away a few days after treatment. The nerve damage at the root of the peripheral neuropathy may last a bit longer or even become permanent.

The other common Standard of Care regimen is based on Gemcitabine, often combined with Abraxane, Cisplatin, or both. Cisplatin may have some effect on peripheral neuropathy, but only a fraction of what Abraxane can cause. Abraxane and Cisplatin don't seem to cause the same cold sensitivity as Oxaliplatin.

For the record, I had 12 biweekly rounds of Folfirinox before Whipple, and 32 rounds of Gem+Abrax+Cis since Whipple. I got over the Folfirinox neuropathy within 7 months of stopping. Since I'm still on the GAC, I have new neuropathy from the Abraxane, but it's not terrible (yet).

One "major cancer hospital" I know of does offer ice glove and socks during treatment with Abraxane. I don't know if they do the same with Folfirinox. Another member here said her oncologist at a different institution specifically _avoids_ ice with Folfirinox, but didn't have details as to exactly why. I suspect if your nerves are already hypersensitive to cold from the Oxaliplatin, that adding ice may overload them (like tuning your ears to hear a whisper and then lighting a firecracker, or tuning your eyes to see in the dark and then staring into a laser).

However, compression has also been found to be helpful, and a lot more comfortable. What I've done (not consistently) is put extra-tight surgical gloves on my hands when the Abraxane is going in, and keep them on as long as possible afterward. That makes it easier to play with a phone or turn pages of a book than if you're icing your hands. For my feet I wear compression socks for the same interval, but add ice booties over the socks, so the cold sting is muted a bit. These are fine with Abraxane, but you _might_ be better off with compression only if you're getting the Oxaliplatin with Folfirinox.

You could always ask if they can substitute Cisplatin in place of the Oxaliplatin and reduce the neuropathy risk. They'll look at you like you're stupid, but until they provide a good answer why not, it's not a stupid question. 😉

Wishing you the best with your treatment!

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Thanks so much for the reply! I'm starting the Folfirinox tomorrow and just going to do everything they tell me to & think positive. Current plan is 3 months on this, then hopefully ready for Whipple, then probably 3 months chemo after.

Appreciate the Cisplatin suggestion - best of luck with your current journey too!

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