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.

@marciak9

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

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I loved scarves but was not very good at keeping them on my head 🙂 Headcovers unlimited has some wigs, hats & scarves; the hats are my favorite 🙂 Some of the hats crept up over my ears & my husband thought the "newsboy" hats were not so good for me. Amazon had some great deals on hats. Some had multiple hats for a great price & the colors I did not want I gave to the center where I got my chemo so others could have them. I got one expensive wig through insurance, but the DME person never sent in the paperwork & closed, but I use it a lot. Paula Young has good prices. Some wigs are great; others not so much but for the low prices I could have some fun. Watch for the sales & lower shipping 🙂 Now I wear a wig or hat when I go out, but when I am around the house, I take it off & let the air help it grow! (don't really know if it does, but I like to think so) 🙂

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@marciak9

That’s tough to hear but makes sense. I had 6 months to recover from my first 12 rounds of chemo. I thought I was ready for more chemo but it’s just knocking me down. I’m so weak it’s tiring to think.

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Exactly. Imagine an 83 year old woman with weak heart who hardly walks already

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@rbaum123

The family and the oncologist all agreed that chemo is not an option. The doctor said it would make her very sick.

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That’s tough to hear but makes sense. I had 6 months to recover from my first 12 rounds of chemo. I thought I was ready for more chemo but it’s just knocking me down. I’m so weak it’s tiring to think.

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@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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Good information as always. I love reading your responses.
I have been collecting scarves over the last few years and they are fun to wear. I also have some knitted hats and baseball caps. I did get a wig on Amazon for 25 bucks. Looks weird.

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@mnewland99

Hi Marcia,
Join the bald eagles club!
All of my hair fell out about after the number of treatments with the GAC treatments as yours - it’s the abraxane. I’m still trying to find a good wig - I’ve been through 3 already and don’t really like them so I wear cute knitted caps as I’m on round 8 maybe? I haven’t been counting this go around in stage 4. In stage 2 ( last year) I was on 5FU and I counted every chemo session in anticipation of the final 12th round. As far as I know as long as abraxane is working you won’t have to visit your hairdresser! I try to look at it that I’m saving on those $175 hair styles and helping the environment by not having to buy those disposable plastic razors which just get thrown in trash)!

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Hi Marie.
I’m on the same journey as you. Did you have the Whipple? I didn’t because of blood vessel involvement. 12 round folfirnox then 15 radiation treatments. 6 months vacation and now stage 4. In only getting two chemos this time. Gem and abrax.

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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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Hi Marcia,
Join the bald eagles club!
All of my hair fell out about after the number of treatments with the GAC treatments as yours - it’s the abraxane. I’m still trying to find a good wig - I’ve been through 3 already and don’t really like them so I wear cute knitted caps as I’m on round 8 maybe? I haven’t been counting this go around in stage 4. In stage 2 ( last year) I was on 5FU and I counted every chemo session in anticipation of the final 12th round. As far as I know as long as abraxane is working you won’t have to visit your hairdresser! I try to look at it that I’m saving on those $175 hair styles and helping the environment by not having to buy those disposable plastic razors which just get thrown in trash)!

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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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Mine began to return after a few months and today is fully returned

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@gamaryanne

Did they discuss Gemzar for your mom? Folfurinox can be very tough but most find Gemzar to be easier to tolerate.
You might have a discussion about this drug for her.

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The family and the oncologist all agreed that chemo is not an option. The doctor said it would make her very sick.

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@marciak9

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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If I'm really careful. I tend to get in a zone and don't do things in moderation... But the tan is starting come in a little now that the days are longer. I got the worst sunburn of my life the first time I shaved my head before a surf trip to Australia. That hole in the ozone down there is no joke!!!

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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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Did they discuss Gemzar for your mom? Folfurinox can be very tough but most find Gemzar to be easier to tolerate.
You might have a discussion about this drug for her.

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