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Recurrence after Whipple, Folfirinox and radiation (SBRT)
Hi all, my mom, 73, had Whipple in Feb 2023. Whipple was successful, totally resected but there WAS lymph node involvement. Did adjuvant Folfirinox for six month and 5 weeks daily radiation, has been on surveillance scans since.
Most recent scan shows two new masses in pancreas. Did a PET, showing moderate metabolic activity. Endoscopy was unable to get at the tumor for biopsy due to reworked anatomy. Ca-19 went from 88 to 150 over a few weeks. So this seems to be recurrence according to oncologist. Getting second opinion from original Whipple surgeon (could it be inflammation, etc). , oncology wants to start new chemo regime soon, Gemcitibine/Amaxabane.
Seems that we have to wait three-four weeks for blood test to see if immunotherapy is an option? Why so long?
Any faster/better options?
I don’t understand rumor tissue testing…would they send the “old” tissue? If they can’t get the new tumor tissue?
Could we get a second Whipple?
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Carrie, have you discussed Naliri or Nalirifox? Or is similar to folfurinox but works a bit differently. Since I was dx in 2021, it’s now my third line of treatment. Also, it is very good you are visiting Sarah Cannon. They house quite a few trials and many do not require us to be there full time. I was in a trial in NC that initially required a visit every two weeks then expanded to every three weeks. Travel was paid.
I wish you the best!!
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2 ReactionsHang in there all you pancreatic cancer survivors (my wife) and all you care givers and support team members (me). My wife was diagnosed Oct '22. Six first line. Whipple 3/1/23. Six more first line (3 with, 3 without oxoli). Rang the bell 8/23. Came back 4/24.
Walked in our first PurpleStride last April. We'll walk again this Saturday 4/26. 60 cities will walk on Saturday. Find one. There are a lot of us Pancreatic Cancer family members out there.
We failed our two lines of treatment. Scheduled EBRT (SBRT was not an option). Went to Hawaii. Took the granddaughters out of school. They are the best medicine ever! 20 days of radiation. 4/ 25 CT scan found 30 new < 1 cm spots on what used to be a clean liver. (1/25 CT, 3/25 PET both showed clean liver). Clinical Trial is our Hail Mary.
I read somewhere that they said First line with Oxoli worked but the neuropathy was too tough. But it worked. I agree. The CA numbers were all great when we were using Folfirinox. Had to stop after 9 treatments. Folfiri was more tolerable but probably not as effective. Is there a way to have Folfirinox with lesser amount of Oxoli? Btw, Gemabraxine/2nd line temporarily worked great for us. Reduced then kept the CA down for 4 months, then CA started back up. Her taste came back with Gemabraxine! She gained weight. Hawaii was an option at that point.
Hang in there!
Team Toke
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6 ReactionsTalk to docs about NaliriIt has a different type of irinotecan. Could be enough difference to make a difference!
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1 Reaction@carrie40 Did the mets ever show up on a PET or CT?
I don’t make ca19-9.
Hoping for clinical trial for you.
Best,
Lynne’
No, mets never showed up on the PET or previous CTs. The latest CT (4/24/25) showed a problem with the portal vein, oncologist said that was probably due to the peritoneal cancer. There was also a lump above my navel, which the oncologist said was probably cancer. I have an education session coming up about new meds and I am waiting to hear about a clinical trial. It seems like lots of negatives lately, but hopefully something positive will happen soon. Thank you for asking...
I would love to have a clinical trial for PIPAC that Mayo is offering; I keep reading about it and more and more realize I could go to where they are doing it. But I'm in the Sarah Cannon clinical trial waiting line right now. Carrie
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1 ReactionHi Carrie. Is it difficult to get into a clinical study in a timely manner at Sarah Cannon? I’m looking into a study there too. Thank you.
Sandy,
I've been waiting about 3-4 weeks after an initial visit. I asked about 2 weeks ago and they answered it's typically 1 1/2 to 2 weeks. I have glaucoma which may be slowing up the process. Carrie
If you don’t mind me asking, what trial are you trying to get into? I’m looking at MEK Inhibitor IMM-1-104 clinical trial.
Thanks Carrie.
They didn't tell me what trial...I probably don't know enough to ask. I would think a trial would have something to do with peritoneal carcinomatosis. If I don't hear soon, I think I will start Gemcitabine/Paclitaxel; I just took the education session for it. I feel I have to do something as my symptoms seem to be worsening. What kind of metastasis do you have? Carrie
Mets in the liver. Good luck and I will be thinking of you.
Sandy