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.
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
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.
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..
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 🙂
Thanks for sharing! Did you wear a wig or scarf?
Thank you for your response. Are you able to wear sun screen on your head and let it tan a little?
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.
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!!!
The family and the oncologist all agreed that chemo is not an option. The doctor said it would make her very sick.
Mine began to return after a few months and today is fully returned