Pancreatic Cancer Group: Introduce yourself and connect with others

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.

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!

@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.

@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!

@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!

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 , 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.

Thank you for the information. A little more background on me. I have been on Creon for 3 months. I always had trouble with constipation and after a colonoscopy and Eno I started having steatorrhea last December. Gastro wanted to do another colonoscopy and I was sure this was upper not lower. Finally had a stool sample result with enzymes less than 50. Less than 200 was listed as being severe. My diabetes has been more difficult, and I have been getting weaker. Lots of muscle loss and stools have been floating (from fat) for about a year. I have lost about 30 lbs. without trying. Actually, I have been eating more calories trying to stop muscle loss. After going on Creon 3 months ago I have been pressing my gastro to check my pancreas. No luck. When I was in the hospital last week my gastro's partner came by and she was still insistent that I was just old (67) and my pancreas stopped making enzymes from aging. So, all the indications have been there but were not acted on even with repeated requests by me. And yes, I will be changing gastroenterologist.

There is a Cancer Center of excellence in KC with KU med. I have been up there to KU med on another medical problem. KU does even have a hospital down in Wichita near where I live. I am really not wanting to go to KC. It is a long 3-hour drive and lots of traffic when you get close. Really a full 8 hours driving time from my house to the doctor's office round trip. I am not sure that I will be able to make those drives in my current health. Drives across town are even difficult for me. If there is some outreach at the KU medical center in Wichita I will see if I can get on with them. Not sure any hospital near me has a GI recovery floor. Maybe a part of a floor. Last week at the hospital the ER had hall beds. Not enough rooms in the ER so people were parked out in the hall. Staff is really over worked. I was put on the Cardio floor when I was admitted so you really get only what is available. The staff were really great though. This was not at the KU hospital though and one thing I have to ask the surgeon next week. I have reached out and have information that this surgeon is very good. Most likely the best in town for this.

Again, I do not and will not pile up a bunch of medical debt for treatment of a fatal decease with a short survival time. I will call KU Monday to get some information from them. Mainly if they accept the Medicare approved amount. And what if any non-covered charges there are. That is also on my list for my local surgeon. Surviving the surgery is another thing that I am concerned about. I'd like to find out about diet supplements. I am still losing muscle and need something to help the Creaon with the fat. The Creon helps but does not solve the problem and I still have to watch my fat intake and limit it. Seems I need something other than just Creon. I am not getting what I need from fat, and I think that will make healing and recovery much more difficult. Most likely a longer hospital stay due to slow healing.

Thing is that I cannot wait long. If the cancer spreads, then there is very little to do and even less survival time. I cannot have an MRI. At least the hospital I was at refused to do one. So, anything going forward will have to be done without an MRI. I will ask what my options are other than surgery. As well as if I have surgery if they can correct things so I can have an MRI.

Thank you for the really good information.

Some update. Meet with Dr. Ahmad again. I was in better shape to ask questions. He advised my cancer was stage 2-3. Not 4 as they did the second CT with full dye to look for other cancer and found none. Said that PET will be done after surgery. Or maybe after Chemo. As there will be no tumor radiation will not be done. The brush biopsy of the duct where the tumor was pressing causing the blockage was not conclusive. There were some abnormal cells but no cancer cells. Doc said no need for any more test we need to get the tumor out. Cancer blood markers were 1500-1600 and very high. Tumor imaging was consistent with cancer. My 1/2 sister had breast cancer and they did chemo and radiation to kill the tumor before surgery. Seems some places still do this with pancreatic cancer, but a lot take the surgery first and as fast as possible as the cancer is very aggressive. My health is such that I will most likely not qualify for a trial. I researched this doctor, and he is very good and most likely my best option locally. And I have an oncologist picked out that is very good also. I have not been called yet to schedule the surgery. Most likely my cardiologist is dragging this out a bit. Dr. Ahmad said he will attempt the Whipple with laparoscopy but scar tissue from a prior abdominal surgery may require that he open me up again for the Whipple. He said around 4 hrs. for the surgery. I will have a drain and lymph nodes will be removed and tested as will the tumor in preparation for chemo. A week to 10-day hospital stay. I was told I would be permitted to eat anything I wanted up to midnight before the surgery. My gastro is out on vacation as is my GP doctor. The gastro office did call to try to schedule another endoscopy with the ultrasound probe and biopsy. I explained I meet with the surgeon and that he wanted to proceed with surgery without any other testing or procedures. I guess he does not want the tumor poked any more than it has been already to keep it from spreading. I still have no follow-up appointment with my gastro doctor and am waiting on a call back. Next week I will see my GP doctor for follow-up from hospital stay. The tumor pushed closed the bile and enzyme duct where they meet in the head of the pancreas. This caused my steatorrhea starting last December and over time I used all my vitamin K. I am on warfarin for blood clots and with no vitamin K my blood went supper thin. Normal is 1. My target is 2-3. I was at 9 INR. My GP doc manages my INR and put me in the hospital. Hospital doc did blood work and found Bilirubin at 12. Normal is also 1. Ultrasound showed a problem with the ducts in my liver being bowed out. And I was yellow with jaundice. Gastro finally placed a stint to open the duct to the liver. Pancreas duct is blocked by that stint. That will be removed with the Whipple surgery. I'd like to ask my gastro about my Creon. It is not working well to digest fat. It helps a lot but still has a way to go and I want to get it worked out to help me heal from the Whipple surgery and even afterwards.

The bad is I want to have a lot done before the surgery in case I don't make it. I have been going through stuff and throwing a lot of it away. I have tried to get my sons to help going through my collectables to pick what they would want and then go and sell the rest. I most likely won't be able to enjoy having them much longer and after surgery there will be Chemo. Doctor said in about a year my quality of life would return. It's the in-between that I am worried about. Not sure I will make it. The boys can't seem to face the fact that I will not live forever. And I think the reason they are waiting to do the PET scan is that it may have already spread. The PET scan would show it and the surgeon would not get to make any money cutting on me. I'd get a second opinion if time permitted. Just keeping my fingers crossed and hope for the best. I am single and have my son's names on my house, bank accounts, and cars. But there are still a lot of things to go through. I have my cremation paid for also. I found an MRI that was done of my whole spine so the hospital just did not want to do one for me. At least I have it now to show I can have an MRI of my body.

A quick question I did not ask the surgeon. I read that to expect to need 3 units of blood for this surgery. Is that true for robotic as well as being opened up or just if they need to open me up? Any advice on how to get my sons to use what good time I have left to get things ready?

Hello markymarkfl,
Thank you for the information you provide to all of us, it is so helpful! Regarding the clinical trial, how are you doing these days? Are you out of hospital now? My oncologist did verify that my kidneys are working better than average, but did confirm what you wrote earlier that sometimes abraxane can lower kidney function so thanks for that heads up! I continue to pray for you and all others on this board.