Pancreatic Cancer Group: Introduce yourself and connect with others

I spoke with my oncologist today after receiving the news that my cancer had spread to my liver despite my 12 rounds of Folfirinox. Turns out it has also spread to the soft tissue in my belly. So surgery is not an option. They are starting me on gemcitabene nab-Paclitaxel in 2 weeks. I understand the side effects of this cocktail will be worse than the Folfirinox. And my chances of good response are getting slimmer. My oncologist mentioned a new class of drugs that will be coming out at the end of the year that target the KRAS mutation, and I may be a candidate for that. Anyone have experience/knowledge of this new treatment?

Hi Carol, don't be scared, I'm stage 4, and I've had 12 chemo treatments and it's going well. But life will be harder, the end will be good. Think well, of course nothing will ever be the same. Read the articles about the side effects of chemotherapy, and tell anyone who can help you. I wish you good health.

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I wrote about my brother Frankie who has pancreatic cancer he had the Whipple surgery August 16 my brother is now in the facility small skilled hospital and he still hasNot recovered they took him by ambulance to see his surgeon and they are now saying that if he can’t gain strength to be able to walk and gain weight he will miss the three month window to start chemo I didn’t know about the timeframe of when you need to start Chemo we are keeping him in this facility for one more week and then we are bringing him home where he can be in a loving nurturing environment and we will take care of him we are praying for a miracle and I am Praying for everyone that is going through this Be aware of your loved ones recovery some facilities will not encourage them to eat the small meals they need to to maintain their body weight or gain weight and And will not get them up to walk and have physical therapy you can’t just lay in bed And some facilities will not have the kind of physical therapy you need after the Whipple surgery

My otherwise healthy daughter was diagnosed earlier this year with stage 4 pancreatic cancer when going to the hospital with severe abdominal pain. I have found this group informative as patients share results of various treatments, much of it guided by particular mutations either inherited or within the tumor itself. There are various types of chemo drugs and PARA inhibitors designed to target one's cancer. It seems to be a trial to test and see what works best. I am encouraged that there options to try that were not available even a few years ago.

Hi, I was diagnosed with stage 2 pancreatic cancer in December 2023. Had clinical trial immunotherapy in January, and modified Whipple surgery in February 2024. 26 lymph nodes were removed, cancer was in 3 of them and in some nerve tissue - however, all my margins were clear. I began 12 rounds of Folfirinox on April 6th, just finished on September 13th. CA19-9 before Whipple was 162, after Whipple went down to 5,8,11. CT scans showed no recurrence or metastases - until my October 2nd CT scan which showed 2 lesions on my liver, 1.5 cm and .5 cm. I am interested to know whether anyone has had surgical or other treatments for pancreatic cancer metastases to the liver, and any outcomes? Thank you.

Here's my experience with Folfirinox. I was diagnosed with stage 4 pancreatic acinar cell carcinoma in Sept. of 23. I started 12 cycles of Folfirinox that ended in early April of this year. I was 74 when I started the chemo. I tolerated it well but still have some aggravating peripheral neuropathy. It's a 3 day chemo session actually. 1st day is the infusion in the cancer center. Then I went home with the pump for 46 hrs. After the pump was off, I forced myself to go to the YMCA and continue my daily long swimming exercise. I'm convinced that helped me more than anything to withstand the chemo. You_have_to try to keep your body strong. When I started the chemo, the last CT scan showed a 7.3 cm X 3.5 cm tumor on my pancreas, several cancerous lesions on my omentum (abdominal wall, I think) and 3 cancerous lesions on my liver. Biopsy confirmed all findings as cancer. At the end of chemo in April, the CT scan showed no evidence of any tumors except one remaining on my liver. My oncologist wants to have another laparoscopic exploratory procedure to check for cancer in my peritoneum and if none is present, proceed with radiation, microwaves or radioactive beads to try and get rid of the tumor on my liver. My understanding is that cancerous nodules/lesions, whatever are extremely hard to detect in the peritoneum with a CT scan. Chemo can be tough. I wish you well, ma'am. Keep your body strong.

I was diagnosed September 6, 2024 with stage 3 pancreatic cancer. I will be starting chemo with folfirinox in a few weeks and am terrified. I dont have much of a support team. How much help will I need?

The doctor says if the Lumakras doesn’t work, I’ll have to go back to chemo and the only one left for me is Irinotican. I had an allergic reaction the first time they tried it so I’d have to be hospitalized. Is that really the last treatment for pancreatic cancer?

@bonniestork, have you started neodjuvant chemo now? Are you also taking immunotherapy for the melanoma or is that on hold for now?

I just had my blood work done and my CA 19–9 went up to 39. It doesn’t seem that high, but mine hasn’t really changed much over the last few months. But the doctor was concerned and moved my pet scan up to before her next appointment, October 15. Now I’m worried the lumakras isn’t working and I have to go back to chemo. Right now, the only chemo left for me is irinotican which I had an allergic reaction to. That means I would have to be in the hospital while they get me used to it.