Pancreatic Cancer Recurrence after Whipple

Something I believe in the near future I'll be having to explore with my father as well.. 1 year after whipple and scans are showing possible infiltrative tissue near the mesenteric artery that we're gonna have to deal with at some point.

Do keep posted.

Thanks so much for your response. The requirements of the present study are that you have MRD as indicated by elevated tumor markers and a positive ctDNA test. You have to have been through first-line chemo and surgery. They actually rule you out from participation if you have a scan showing tumor or metastasis. It's a very small hole in the needle to fit through (as are most clinical trial requirements). Also, they are targeting the mutation I have, which is KRAS G-12d. Like I said, it's an almost impossible hole to fit through. The only criteria I did not meet was that I was ctDNA negative, but as of early February Signatera test, I have converted to ctDNA positive, which now qualifies me for the study. I have read the prospectus for the study and the complete Client Consent Form which are very detailed. So, I'm pretty certain that I qualify. Dr. Messersmith is reaching out to the team (he is the head of research here at UC Health Anschutz) and I will know tomorrow whether I qualify. I am glad that I have time to make a reasoned and planful decision. Thanks so much for your input.

Hello Bethf, while I know it is tough to find out that the tumor marker tests are going up, it is great news that you are feeling well and the scans are stable so far. In regards to your two options, my understanding is that most clinical trials do require "measurable disease" in order to qualify. Specifically, they need to see at least one centimeter of tumor somewhere in the body that is confirmed either with a biopsy or PET scan showing that it is in fact cancer. You mention in your post that your scans do not show evidence of cancer right now. Please double check the requirements to get on the immunotherapy trial to be sure there is no requirement for measurable disease. If there is such a requirement (which is common), your choices at the moment would only be chemo or waiting until measurable disease appears on the scan. It's difficult to say what is the best option, as you do not want to interrupt the good quality of life you are having now. I would talk to your oncologist and see what he/she recommends. One medium option I can think of is to perhaps try chemotherapy for a month or two and see if your tumor marker numbers go down. If they do, you know it is working and you can continue for some time if you feel your quality of life is still ok while on chemo. If not, you can then attempt to get on the trial. Generally, clinical trials that are not specifically geared to a specific mutation/fusion that your tumor has are used after the standard chemo options are no longer working or tolerable. The great thing right now for you is that you are feeling great and have some time to make a very well researched and planned out treatment decision. This is a huge blessing.

I have been replying to others but I want to post a question of my own here:
After 10 months of NED/remission, (I was diagnosed April 2021, Whipple May 2021, chemo Aug 2021 to January 2022, short course SBRT radiation in April 2022, excellent health and good followups- since April 2022)

Since 4 weeks ago, I found out that I am having an aggressive recurrence which I just found out about within the past few weeks. I am considering what my options are and whether further treatment and what type of treatment has the greatest likelihood of success. My basic choices are chemo (probably Gemzar as I am not willing to do Abraxane with it) or an immunotherapy trial (ELI 002, Phase 1B) that I am almost certain to qualify for that is here at UC Health Anschutz in Denver. Or wait and see.
Right now tumor markers are going up rapidly, no evidence of a tumor or met on scan but have converted from ctDNA (testing for tumor circulating in the bloodstream) from negative on past two ctDNA tests to positive on the test 3 weeks ago.
My oncologist in Denver says that there are only 2 reasons to do chemo: to live longer or to feel better. I feel excellent now and have for the past 10 months, so chemo would not make me feel better but very likely make me feel worse. Or to increase longevity, which most research indicates has a very small chance of giving you a much longer life when started early than when given with delayed treatment that would be given only for clearly defined metastatis or for symptoms that may arise. I have no symptoms and no tumor to treat at this point.
My questions are: Have any of you known others (or been through yourself) treatment that felt truly worthwhile to you after Whipple and first line chemo (mine was Folfirinox) that you think either made you or your friend or family member live longer or feel better?
If faced with a recurrence and chemo (proven not to be effective for very long in most cases) or an immunotherapy or targeted therapy trial option, what do you think you would choose?
I would appreciate having your input based on your own experiences and even just your opinions. I am obviously also getting professional input and consultation about this as well. Thank you, Beth

The scans I have had so far during surveillance and only CT scans. My oncologist says that if anything on these scans changes significantly he will probably have me do a PET scan to further define things. He is very expert and experienced in this field and I trust his advice. However, I do wonder if a PET scan might be generally more useful than a CT scan. He feels CT scans are adequate to detect tumor return or metastasis. I believe insurance coverage is also an issue. For insurance to cover, I think you have to have a CT scan and indications that a PET scan is needed before it is covered because it is a more expensive test. I've been told that there is no way in my case of a diffuse area in the pancreatic bed to completely tell what might be cancer and what might be scar tissue.

Thanks for sharing your story.

Can you tell me what type of scans you had and how often. I do not secrete CA19-9 so I can't use that as a marker. My CEA is only slightly high and has fluctuated. If I go off of chemo I wonder what scan will be a accurate assessment when the tumor could be scar tissue and show no change.

I went into full remission after chemo, though there was a diffuse area in the pancreatic bed that was of concern, but not clearly cancer at that point. I had 10 sessions of SBRT in April 22. Since then I have had two 3 month surveillance appointments with numbers good and scan not showing any changes or metastasis. However, in just the past 4 weeks I had new CEA and CA19-9 tests and tumor markers are increasing. I have been in remission about 1 year and have felt great--no problems. I still feel great, however, now tumor markers are trending up rapidly, scan is still stable, but I have converted from ctDNA negative (a good thing) to ctDNA positive (a bad thing) in just the past 4 months. I think surveillance with blood work and scans are often the next step. I have enjoyed being in remission despite the ongoing uncertainty, but now I am clearly having a recurrence and need to look at next steps. I will be asking about this in my own post on the forum soon.

I have had 7 treatments of folfirinox. I developed nueropathy so discontinued the oxiplatin. I had three more treatments of folfirini and 28 rounds of chemoradiation. After a pet CT scan, my only one, I was told that my tumor was dead and I was in remission. My oncologist does not believe this and I'm still undergoing active treatment of folfirini every two weeks. Has anyone gone into full remission from treatment? That is my question also. In research I only found one documentation from small hospital in Seattle Washington with a case of 11 patients.

I was diagnosed September 30,2021 with Stage 4 pancreatic cancer that covers my major blood vessels. I was stage 4 both because of location and because of liver metastasis that was too small to biopsy. I took oxaliplatin for 10 rounds along with campostar, leukovarin, and 5fu. I have continued on and am still on the last three chemo agents. I got pretty severe neurological dude effects from the oxaliplatin that have gradually improved over the last year. I have had two PET scans that show the tumor has died in the pancreas and the liver lesions are no longer there. My Ca19-9 is 24. I am continuing on chemotherapy. My oncologists are researching what to do next. Has anyone gone into full remission from chemotherapy? What was your treatment plan?