Pancreatic Cancer Group: Introduce yourself and connect with others

My husband, age 69 had some back pain about 1.5 years ago. Mentioned it to the doctor. Five or six months later it got a lot worse, so back to the doctor. He was an active xcountry skier, hiker, white water kayaker... and just thought he'd injured his back in some way. Spent all last summer trying to get a diagnosis. And after some chemo and imunotherapy for lung cancer, found that he had been misdiagnosed (by doctor here and also a second opinion from Cleveland Clinic). So, started over with tests and diagnosing. Pancreatic cancer, stage 4, with mets to bones (back), lungs, lymph nodes. Radiation on some of back lesions last fall and after 3 or 4 months his back pain has lessened... from radiation or chemo? CA19-9 numbers were over 39000 last November. Chemo every two weeks since then with Folfirinox. Just had treatment #10. Total exhaustion most of the time, lack of appetite, nausea. The past two weeks we scheduled extra hydration and anti nausea through infusion every few days and that did seem to help. Doctor is saying total 12 treatments of folfirinox, then we'll see. His CA19-9 numbers fell steadily until the one yesterday when it went from 1090 back to 1176. Still very high, but compared to 39000+, it has dropped a long ways. CT scans have been unremarkable, but oncologist says improvement. So that is where we are. Caught us completely off guard as my husband was one of the healthiest people I knew.... exercising daily, etc. Now having trouble getting off the couch. Any suggestions, insights are welcome. Thank you.

Hello @optimist1591 and welcome to Mayo Connect. You are asking some good questions and I see that @markymarkfl has already provided you with some great information.

In your post you said, "Am I over-reacting?" Please know that advocating for the best health care possible is simply a wise decision.

Will you continue to post with updates as to how you are progressing?

Hello @sheridanb and welcome to Mayo Connect. This is a great forum to find support and encouragement for your husband's journey with pancreatic cancer and the treatments involved. It is good to hear that his CA19-9 numbers have dropped significantly.

As you read the posts here, you will probably find that a lot of the members of this group have experienced many of the problems that your husband is experiencing during treatment. When a person has been healthy and active it is certainly difficult to experience this kind of weakness and fatigue. That is understandable.

I would encourage you to read the posts of some of the members here who have been long time survivors of pancreatic cancer such as @markymarkfl and others. As you direct your questions and comments to them, begin your post using their usernames as I did when I began this post to you (remembering to put the @ sign first).

You might also be interested in another discussion group on Mayo Connect, here is the link:
--Cancer Managing Symptoms
https://connect.mayoclinic.org/group/cancer-managing-symptoms/
Included in that group is a discussion which might also be helpful:
--Emotions and Anxiety with Cancer
https://connect.mayoclinic.org/discussion/emotions-anxiety/
I look forward to hearing from you, Will you continue to post about how you and your husband are doing?

@hopeful33250 Thank you. My primary care assured me yesterday that the protocols for this are quite well established, but he encouraged me to get a second opinion, which I am. My husband researched several articles from NIH and Sloane-Kettering that address follow-up care, which are rather long, but well documented. I have the specific question in to my gastro MD about whether protocols change given a prior cancer history. So I continue to seek out information because as we all know, we are our own best advocates. I appreciate access to this forum and the additional guidance. Thanks to all and best wishes to all.

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?

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!

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!

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

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.

@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.