Pancreatic Cancer Group: Introduce yourself and connect with others

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?

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 wanted to check to see what everyone’s thoughts were on my mom. She was diagnosed in March 2024 with pancreatic cancer. Tumor about 2.5 cm at the head of the pancreas. The surgeon has informed us that it is resectable based on imaging. No metastatic disease seen on imaging, or micro cytology of abdominal washing.
Chemo was advised first. Then surgery, then more chemo.
Her tumor markers are “normal” under 30 now, tumor size unchanged. My question is: Is there a benefit to waiting and continuing more chemotherapy to 7/16/24? Then surgery 8/20/24-
Whipple. She continues to get weaker and loose weight.

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 happyjack,
Thank you for all of the information provided, though I don’t have much feedback I can provide from the medical end of things. I will be 67 next month and am in generally fair health (type 1 diabetic now, high bp, cardiac arrhythmia stemming from electrophysiology not structural heart problems, sleep apnea, glaucoma, high cholesterol, allergies, , asthma, and pancreatic cancer); with this list I wasn’t 100% sure I would come through my surgery (distal and spleen removal) in October 2022, but I did. I have a low fat diet normally and watch my carbs but I do love sugar! My was responsible for closing up my dad’s belongings, and my mother’s when they came to live us (different decades for each of them) and saw how arduous it can be when you are grieving the loss of someone and have to take care of things like clearing their stuff. My dad had a funeral plan so that made things easier, so I made a pint to obtain one for my mom. My very best friend (since high school) got gallbladder cancer just a few months before my pancreatic cancer and very unfortunately she passed. Most people want to be hopeful about their prognosis and that’s wonderful, but it’s also good to be prepared. My BFF was not prepared at all and it took 3 garage sales for her children, husband and sister to dispose of her stuff; so difficult! I let my children pick what they wanted from my stuff (not much!), and the rest went to extended family, friends, and goodwill and NeighborNextDoor. It just makes life easier for them. I have a plot paid for where my mom is,and ultimately sold my home in Huntington Beach; it wasn’t easy but I felt it was the right thing to do so that I could be sure my kids would get their money and buy a house etc. I. The near future (the proceeds have been invested). I’m on the Bolsa Chica Land Trust Board and have a small environmental consulting business that I work part-time at. I just signed up for an online AutoCad class so that I can future work for my business which I hope to pass in to my daughter who is studying same field. I have a very modest bucket list ( going to an expensive restaurant here, wanting to see DePeche Mode in concert or other 80’s band, taking g a ride with family on a Duffy boat in a local marina. My family has had a wonderful time sharing these moments. Side note: please persist with that MRI - that’s how my liver lesions were found. Well wishes for you sir and keep the faith!

happyjack,

First, the medical profession is not out to get your money - they each have trained for tens of thousands of hours and have your best interests foremost.

Re estate planning - I found great solace in having a trust with living will completed (many attorneys will do this via facetime or zoom - depending on your state's laws), all bank accounts and investments centralized (in my case I chose Fidelity, but Schwab does a good job, as well) - I found Fidelity far and away more knowledgeable and professional than local banks and credit unions.

@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!