Pancreatic Cancer Group: Introduce yourself and connect with others

@spongybob , You're very welcome! Good attitude and fully understood.

Did you find a section in your post-op pathology report or get word from your surgeon on what the tumor response score actually was? They would probably only even consider something similar to Folfirinox if your response score was good. If it was, and no better options are immediately available, you might inquire if the Leucovorin + 5FU (the sucky part being the 46-hour pump you take home) could be replaced by oral Capecitabine (which converts to 5FU in your system). Since you were hospitalized 3 times, that is not a good sign for the Folfirinox-related options/ingredients. With the GAC, you might still ask about starting slow (lower dose) to avoid bad reactions and determine sensitivity to each drug individually. There was a trial at Mayo/Jax (possibly other locations) adding TTF (Tumor Treatment Fields) equipment to GAC for patients with liver mets. Not sure if it's still recruiting or is available at a realistic location for you, but you would have to get into it all at once (before starting chemo) to qualify.

Here's hoping the chemo bridge is short (if you even have to cross it) before getting to a longer-term solution via a more tolerable trial drug/therapy.

Thanks for your story.
I know this all sucks for everyone and in different ways. I know personally that any new chemo that makes me feel anything like Folfirinox, is not on the table for me. Besides getting infections and being hospitalized three times over 12 cycles, I can't say I have ever felt that bad in my entire life. Worse than that, I could see the hurt in the eyes of my loved ones when they see me. The good news is I feel great today and I'm here!

@spongybob ,

61 years old here... After 6 months (12 rounds) of Folfirinox, my Whipple and 22/22 nodes were declared clean, and I had no adjuvant therapy afterward. Pathology also showed a "grade 2" (medium/partial, on a scale from 1-3) of tumor treatment response to the Folfirinox. I kinda felt like that was six months of time wasted.

No evidence of disease on tests (2 Signatera, 1 Galleri) afterward, although CA19-9 started creeping up slowly. A follow-up MRI 4.5 months after Whipple revealed tumor was back (1.3 cm) at the place it was "successfully" removed. Long story short, it had also metastasized and put me in the Stage-4 camp in January 2023, ruling me out for surgery and radiation, sending me back to Camp Chemo.

Since I'd only had a grade-2 response to Folfirinox, and also had a germline ATM mutation, I started on Gemcitabine + Abraxane + Cisplatin (GAC). It was predicted to last me 6-8 months before drug resistance developed, blood counts tanked, or CIPN (chemotherapy-induced peripheral neuropathy) got bad enough to require stoppage.

16 months later, I was still feeling fine and responding mostly well to the GAC! Aside from some fatigue and nausea (never vomited) for 2-3 days after chemo, I always felt mostly normal and was back to work every Monday after each biweekly (Fridays) chemo. The complete hair loss was an obvious symptom, but acceptable. For me, the worst was the fatigue that developed over time between job stress and dropping hemoglobin (anemia). Those were managed successfully by job and life changes, caffeine, Ritalin, and a couple blood transfusions. There were minimal/increasing signs of drug resistance by about month 15. Neuropathy never got past grade 2 (moderate, but not painful or debilitating). My blood counts and kidney function are still adequate, but declining toward the lower end of normal. My biggest limitations were to vigorous exercise, but I can still do a brisk walk for 2-3 miles with no issue and do moderate work around the house. The timing was about right to stop and enter a clinical trial by May 2024.

So, in summary... Everyone is different -- different tumor response and different patient tolerance to chemo. I did not enjoy Folfirinox, but found the GAC much more tolerable and much more effective. I also know two patients (one now deceased) who had severe reactions, so I don't want to portray it as a walk in the park

The thing for you to do is search furiously to see if there is a good clinical trial you can get into before you have to resort to another "sentence" of traditional chemo. Starting a traditional chemo might disqualify you from some potentially good trials, but delaying the start of chemo for too long might allow your cancer to spread. Tough balancing act. If you do start first on a traditional chemo, keep a vigilant eye out for appropriate, realistic trials as your best future option. There are a lot of new drugs and therapies being developed that have much milder side effects than traditional chemo. Do everything you can to stay in shape as long as you can, because declining health can sometimes disqualify you from a trial. If needed, traditional chemo is just your bridge to a life-extending (-saving) trial.

Hang in there!

@happyjack , I'm glad your doctor wants to talk some more before jumping into surgery. I don't recall if you had PET scan or other imaging to search for metastasis to other areas; if there are mets, that usually rules out (and spares you from) a fairly major surgery.

If you are getting surgery, consider the hospital's record in the GI specialty and particularly this surgeon's reputation and number of procedures. Pancan.org can help you assess that. It's not just the Whipple that's a surgical challenge, but the next week (at least) of monitoring for leaks and other complications. The hospital GI recovery floor and staff should also have substantial experience in dealing with Whipple patients. If not, you may wish to consider a more established "Center of Excellence" hospital for pancreatic cancer.

If you do get surgery:

1) Ask them to save as much tissue as possible. It will be handy to have if you need it tested or cloned later for a clinical trial.

2a) Ask them to send some of the tissue directly to Tempus for next-generation sequencing (DNA testing) to identify mutations in the tissue. PanCan.org can help pay for this as part of their KYT (Know Your Tumor) program. This will help outline potential post-surgery treatments for you without the delay of starting later.

2b) There will almost definitely be some type of "adjuvant" (after surgery) treatment; likely chemo, radiation, or both. But they would likely wait until you're fully recovered from surgery (6-8 weeks) before starting. Ask them if there's a clinical trial (such as vaccine trials) you can get into first instead of going the harsh chemo route. They may not have trials within their institution, but ask them to look outside as well. The AMPLIFY-7P study might be one option, depending on what's revealed by DNA testing of your tumor.

3) Ask them to send some of the tissue directly to Natera Corp. for construction of a "Signatera" test personalized to your tumor's DNA. This enables them to use and repeat a simple blood test later down the road to see if cancer (Minimal Residual Disease) has come back or monitor treatment effectiveness over time if it has.

4) Expect about a week in the hospital, and a couple days of feeling like you've been punched in the gut. All other blood parameters being normal, they will probably require you to poop or at least pass gas before discharge, to be sure your bowels are returning to normal function.

5) Ask for an enzyme prescription before you go home. With half your pancreas gone, you'll have challenges digesting food normally. Fats may be the most difficult, but that's sometimes the first comfort food a patient resorts to when going home. If you're seeing greasy, orange stool (steatorrhea, kind of like diarrhea) after a bowel movement, that's a sign you're not digesting fats sufficiently. It sucks to suffer for a month and wait for follow-up before a doctor tells you of this problem, so just ask them to send you home with enough enzymes to try for a week or two to help balance out the problem.

6) Depending on how much pancreas they take, you may also become diabetic (similar to Type 1, not producing enough insulin to compensate for sugars you eat). Make sure to ask them about monitoring and managing this. Instead of having to poke your finger multiple times per day, endocrinologists sometimes have "trial" or "demo" CGMs (Continuous Glucos Monitors) you can attach to your arm and monitor 24/7 via an app on your phone for 7-10 days. The Dexcom G6 (and now G7) have served me well.

7) Plan on taking it easy for at least 6 weeks after the surgery. It's not an easy recovery. Sometimes the digestive issues might surprise you, including sudden wakeups in the middle of the night. Sleep disruption does not help with recovery! You might also want to buy a pack of adult diapers, just in case...

I hope this helps. Wishing you the best with it all!

@gwen72 , I don't know of any funding programs, but insurance denials can be appealed. Sometimes the magic keyword is "peer-to-peer phone call" between the treating physician and a medical director at the insurance company. You can always request one, and it might circumvent the long, standard, circuitous delays of their typical appeal process. I've gone that route with success twice.

Hello,
I'm a 66 year old male that was diagnosed with pancreatic cancer in June 2022 when they found a biliary stricture that was due to pancreatic cancer. I was told it was caught early on and I had 8 cycles of Folfirinox, some radiation, and then a supposedly text book Whipple with clean margins and cancer showing up in only 2 of the 21 lymph nodes that were removed. I then had 4 more cycles of Folfirinox. That all ended in July of last year and I have been receiving regular blood test and feeling great. All of a sudden, my CA 19-9 kept going up and reached in the 1000's. The first CT and PET/CT scans found nothing. I then had a PET/MR that found two small liver lesions. The larger 9mm was biopsied and I was recently told that it was cancerous and similar to that which was removed with my Whipple. The Mayo (Dr. Alberts) told me that without any further treatment the average lifespan is 4 to 6 months and with treatment the average lifespan might be a year or more. I'm going to look at some of the chemo and targeted options, but if I am left with a year of life, felling anything like I felt with Folfirinox is not how I wish my remaining time to be. I would love to hear from any of you that have had the pancreatic cancer spread--particularly to the liver--and feel their extending their lives and still have a decent quality of life. How long have you been able to survive like this?
Thanks!

New patient, I just posted in another forum, however, I should introduce myself. I am 63 years old, female, married 39 years, 2 adult children, one grandbaby and one on the way. Started in January/February with some gastric issues, really thought it was gastritis. Had 2 "attacks" after eating large meal. Luckily my son's best friend's Dad happens to be a gastroenterologist. One text later, I got in to see him. He is former director of GI at a local hospital who opened his own practice and surgery center. Blood work (showed elevated liver enzymes) and ultrasound showed gallstones. Next endoscopy and colonoscopy, both clean. He then ordered an MRI to be sure, well found a 5.5 cm cyst on the tail of my pancreas. He then referred me to Dr. Michael D'Angelica at Memorial Sloan Kettering in NY. Thank god....CT scan and he believed it to be a benign cyst. Scheduled surgery for 5/29/24. Surgery was a distal pancreatectomy; spleenectomy and removal of gall bladder. Unfortunately, pathology showed one lymph node removed out of the 23 as being positive. I am now awaiting the referral this week to a medical oncologist at MSK. Currently stage 1 per pathology. Based on my reading and the surgeon, he said probably 6 months of chemo.

Does anyone know if there's a funding program for patients that have insurance except patients insurance won't cover it.My friend is in the hospital for 4th time for his pancreatic ..this hospital is good sometimes and other times you could be there for 5minutes and out the door with no answer. Please any help would be appreciated..im gonna keep trying to help my friend get down to theMayo Clinic ..Thank you all

I have an appointment next Thursday the 13th to talk to the doctor some more. He wants to talk more to me before scheduling the surgery.

Yes he is going to give it a try at Vanderbilt in Nashville