Pancreatic Cancer Group: Introduce yourself and connect with others

Henry, my prayers and thoughts are with you. Where are you currently getting treated?

Hi Mike - thanks for your prayers - I'm currently at Ochsner Baton Rouge - the Ochsner health system partners with MD Andersen in Houston. I've been really pleased with my care so far. Hope all is well!

Hi Henry,
That’s what I have. The tumor was wrapped around blood vessels. After 12 rounds of Folfirinox, I had a couple months off and then went into radiation. Found that it metastasized to my lungs about six months after radiation then I had the gem/abraxine chemo, but it was too harsh. So now I’m on a new drug called Lumakras.

wow - my team has told me that radiation is not an option for me. But depending upon the latest scan (this morning) we may try the other chemo regimen. I have not heard of Lumakras - will have to ask. Many prayers for your success!

Scans were in 7/24, EUS in 8/24 now starting chemoradiation therapy
tomorrow 9/25/24.
Sally

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.

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

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?

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?

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.