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Pancreatic Cancer Recurrence after Whipple
Pancreatic Cancer | Last Active: Aug 29, 2023 | Replies (76)Comment receiving replies
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
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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.