Pancreatic Cancer Group: Introduce yourself and connect with others

My name is Marissa and was diagnosed with metastatic malignant pancreatic cancer stage III. I went to ED with tolerable pain in the left abdomen-radiating to the back. Before this pain, I did not have any symptoms. They did a CT scan and found the CA. It was a big surprise for me and my family Currently, I am on chemotherapy with no plans for surgery because the tumor was clinging near my aorta. In the last CT, the tumor decreased in size. I'm hoping for a great result next CT. I have not experienced any neuropathy but occasional light nauseous feelings after chemotherapy.

Tumor did not shrink after immunotherapy, however surgery was only a few weeks after the infusions. Tumor size on CT scans was 2.9 cm but at surgery it measured 3.5 cm. Don't know if this was due to tumor growth or just accuracy of CT scans. I've also read about the possibility of pseudoprogression, where the tumor appears to grow after immunotherapy but is not actually growing due to the cancer, but swelling due to the immunotherapy. I have no idea whether that actually applies in my case. CA 19-9 dropped from 165 before infusions to 145 at time of surgery.
Cheers,
Dale

@dalegantous , Did you get any measurements of tumor size and CA19-9 before, during, and after treatment with the durvalumab and oleclumab, or an assessment by the trial research team of how effective it was?

Did you have specific mutations or other unique circumstances to enter that trial?

Best wishes on your journey with Folfirinox!

Thank you! Yes I'm expecting tough sledding with the Folfirinox, just gotta do it!
Answers to your questions:
My Whipple was done openly, not laparoscopically. Surgeon was able to remove 26 lymph nodes, 3 compromised. Immunotherapy infusions were durvalumab and oleclumab. Whipple recovery is going great! I did a lot of walking as soon as I got out of hospital, aiming for 6000+ steps a day. Also I ate tons of protein before going in for surgery, it wasn't easy but very helpful for recovery. I'm able to pretty much eat full meals now. I was fatigued in the morning (after pooping and eating breakfast) but that has pretty much subsided now. Some occasional upset stomach but doesn't last long. I still have a partial collapse of my lower right lung, I should have brought an incentive spirometer home from the hospital with me - just ordered one on Amazon to help me focus on re-expanding that. Just makes it a bit hard to take a very deep breath. But overall I am doing great.
One thing, I had tried to go without the Creon, big mistake, had a lot of diarrhea in the hospital and for 5 days after. Now I take 3 with large meals, 2 with snacks, and all is fine again. Look up the Bristol stool chart, aim for Type 3 or 4 haha!
Best of luck to you!

Thank you! Yes I'm expecting tough sledding with the Folfirinox, just gotta do it!
Answers to your questions:
My Whipple was done openly, not laparoscopically. Surgeon was able to remove 26 lymph nodes, 3 compromised. Immunotherapy infusions were durvalumab and oleclumab. Whipple recovery is going great! I did a lot of walking as soon as I got out of hospital, aiming for 6000+ steps a day. Also I ate tons of protein before going in for surgery, it wasn't easy but very helpful for recovery. I'm able to pretty much eat full meals now. I was fatigued in the morning (after pooping and eating breakfast) but that has pretty much subsided now. Some occasional upset stomach but doesn't last long. I still have a partial collapse of my lower right lung, I should have brought an incentive spirometer home from the hospital with me - just ordered one on Amazon to help me focus on re-expanding that. Just makes it a bit hard to take a very deep breath. But overall I am doing great.
One thing, I had tried to go without the Creon, big mistake, had a lot of diarrhea in the hospital and for 5 days after. Now I take 3 with large meals, 2 with snacks, and all is fine again. Look up the Bristol stool chart, aim for Type 3 or 4 haha!
Best of luck to you!

@dalegantous - Thanks so much for your reply! A few follow up questions if you don't mind. Was your pylorus preserving Whipple done laparoscopically? What were the two immunotherapy infusions you received? How's your Whipple recovery going 7 weeks after Whipple?
Based on my neoadjuvant chemotherapy of 4 cycles of Folirinox and comments by others (before discontinuing it due to extraordinarily severe reactions), be prepared. There may be some rough sledding ahead for you.
All the best to you.

@silver182 I face more big decisions in 4 weeks. I'm scheduled for a Whipple next month (two previous surgery dates in January and February postponed due due elevated CA 19.9 levels). If you don't mind sharing, I have a couple of questions for you.
1. At the time of your Whipple, what was the type, location and Stage of your cancer?
2. If you can recall, what was your CA 19.9 value just prior to surgery?
3. Where did you get your Whipple?
Thanks in advance. It's refreshing to hear a bit of your history and your excellent outcome.
Good on ya.

My name is Julius Butu. I am a Nigerian and live in Abuja
My younger brother (58) had been diagnosed with pancreas tumor.
Where can I receive the best medical attention in US or Europe?

Vicki
May you find lots of good advice here and from other sources as well.
For what it's worth, as one diagnosed with pancreatic cancer (Adenocarcinoma) not quite one year ago, and has been and will be treated at Mayo Rochester, here are a few thoughts and personal opinions.
1. Yes, it typically takes a bit of time to be seen at Mayo Rochester (apparently longer in Mayo Clinics in Florida and Arizona). It took me approximately 3+ weeks to get an initial appointment as a self-referred patient from distant Alaska. Some other renowned cancer centers with expertise in pancreatic cancer say they can see patients somewhat sooner (1.5 - 2 weeks) but I don't really know.
2. If you consider or elect to go somewhere else I urge you only to connect with cancer centers of excellence around the country, e.g., MD Anderson, MSKK, John Hopkins, etc.
3. Of course, the sooner definitive diagnosis and treatment begins, the likelihood of a better outcome.
FYI, there are several folks in this pancreatic cancer group fighting this disease who have an extraordinary amount of awareness of pancreatic cancer and offer informed advice. The moderator for this pancreatic cancer group, Colleen Young, is a very helpful resource as well. And of course PanCAN, the Pancreatic Action Network is a good source of information as well. https://pancan.org/facing-pancreatic-cancer/
I hope this helps a bit.
Best wishes to you and your husband going forward.