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Moderator

Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

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.

marienewland | @mnewland99 | Apr 19 7:32am
In reply to @marciak9 "Hello I just had My fourth round of Gemcitabine with Abraxane, After two rounds, all my..." + (show)
@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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1 reply
marcia | @marciak9 | Apr 19 8:04am
In reply to @mnewland99 "Hi Marcia, Join the bald eagles club! All of my hair fell out about after the..." + (show)
@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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1 reply
marcia | @marciak9 | Apr 19 8:13am
In reply to @markymarkfl "Sorry to hear it, but that's about right on schedule for Abraxane. I wouldn't expect the..." + (show)
@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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marcia | @marciak9 | Apr 19 9:19am
In reply to @rbaum123 "The family and the oncologist all agreed that chemo is not an option. The doctor said..." + (show)
@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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rbaum123 | @rbaum123 | Apr 19 9:23am
In reply to @marciak9 "That’s tough to hear but makes sense. I had 6 months to recover from my first..." + (show)
@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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199 | @199 | Apr 19 10:24am
In reply to @marciak9 "Thanks for sharing! Did you wear a wig or scarf?" + (show)
@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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mayoconnectuser1 | @mayoconnectuser1 | Apr 19 10:32am

rbaum,

I am so sorry. It seems like you and she are caught between tough choices because of her age and frailty.

While my sister was younger, she too had extenuating circumstances (you can read my many posts on her journey). She had back surgery due to a fall, and in spite of various treatments and meds, continuing back pain. The initial pain could have been from the pancreatic cancer tumor - just don't know, and they never tested - had I known then what I know now it would have been easy to insist on the very quick CA 19-9 blood test. If the pain had been from the tumor vs the fall, she would have had a 6 month head start.

During her back fusion surgery recovery - still using a walker, but not making much progress - we noted she was jaundiced. This started the pancan assessment, they quickly found the tumor, confirmed with biopsy, installed biliary stent. She was at Mayo Rochester within a few days,

I tried to make her stay in Rochester, but she wanted to be with her cats. So, she did Folfirinox chemo at home, flying back and forth to Rochester three times for scans and assessments. Her mobility never improved, her back didn't hurt, but she was never healthy.

By the time she had finished F chemo, and five weeks of chemo enhanced radiation (directed by Mayo), she presented with ascites - even though Mayo was aware and had discussions with her oncologist, they still insisted she return. Once there, the usual scans - this time confirming metastasis, and with ascites no chance of surgery.

She returned home, attempted to restart chemo, but was quickly hospitalized due to her response. Recovery facility for a few days following the hospital, then palliative care and then in-home hospice.

Lessons learned:
- get into a pancan center of excellence
- REMAIN at the pancan center of excellence (if you can commute daily for chemo/radiation, fine - if not, then move there - returning home for chemo and care is NOT the best course of action IMO).
- knowing what I know now, my sense is that the best thing to do might have been to have Whipple first, then recovery, then chemo - at Mayo. I know this might not have changed the outcome, but it might have been - in hindsight- advisable.

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marcia | @marciak9 | Apr 19 1:38pm
In reply to @199 "I loved scarves but was not very good at keeping them on my head :) Headcovers..." + (show)
@199

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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It’s weird how I’ve been buying scarves over last few years so I have sins pretty ones. I got a wig on Amazon for $25 that looks weird but I wear it sometimes. People say it looks good but they might be trying to be nice.

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199 | @199 | Apr 19 2:15pm
In reply to @marciak9 "It’s weird how I’ve been buying scarves over last few years so I have sins pretty..." + (show)
@marciak9

It’s weird how I’ve been buying scarves over last few years so I have sins pretty ones. I got a wig on Amazon for $25 that looks weird but I wear it sometimes. People say it looks good but they might be trying to be nice.

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I fully understand what you are saying. I have scarves from the past 50 years that I thought I would use. Alas, my scarf tying ability is severely lacking :). Tried to post some photos but they only liked my bald one & that is not so much fun for progression. Am not that computer savvy to make the photos friendlier 🙁 It is hard to find a hair stylist that will "trim" a wig. Found a really nice local lady & she did okay but not my favorite. Do check out Paula Young & you will not want for mail 😉

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katiegrace | @katiegrace | Apr 19 2:31pm
In reply to @beckyshops "Hi, I was diagnosed on March 21st after going to the ER with Jaundice. What a..." + (show)
@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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I did the cold socks and mittens, and ice in the mouth for the first treatment. I don't know that it really did anything. I couldn't do it after that, because my feet and hands were too sensitive to the cold.
This is what worked for me - If after a treatment, your neuropathy is such that you wouldn't want to live with it if it got any worse, that is when you need to stop the oxaliplatin.
I had 12 treatments of chemo before my surgery. After 7 treatments of the fulfirinox, I told my oncologist, I couldn't do any more oxaliplatin unless she reduced the dose to 25% - From the oxaliplatin, I had terrible jaw pain, and the neuropathy was getting worse-I was getting to the point I didn't want either the jaw pain or neuropathy to get worse. She felt I would still have the side effects of the terrible jaw pain I was having with a lowered dose of 25% (of my full dose), so they didn't give me any oxaliplatin for that treatment. When my surgeon found out later, she was not happy-she wanted me to do 12 treatments of fulfirinox, understandably. After my 7th treatment of fulfirinox, my Mayo oncologist took me off fulfirinox (since I had chosen not to take the oxaliplatin), and my last 4 treatments were gem/abraxane.
I had surgery on Feb 15. They found only 2 cancer cells in my tumor and no cancer in my 40 lymph nodes they took out. Now, 8 weeks post-surgery, my neuropathy does not bother me too badly- I am so glad I made the decision to stop the oxaliplatin when I felt like "if this gets any worse, I don't think I could live with it".
On a side note, I think the 4 treatments of gem/abraxane really helped to continue killing the cancer cells and was much easier on my body than the fulfirinox.

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