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Question regarding “dead” tumor
Pancreatic Cancer | Last Active: Nov 8, 2023 | Replies (26)Comment receiving replies
I have to disagree with you on the statement that once stage IV, always stage IV. That was the prevailing thought with Whipple surgery the only means for achieving cure when a patient was diagnosed at a low stage. The first effective chemotherapy regimen being Folfirinox was FDA approved in 2011 and its modified form in 2018. So no long term studies were available to see whether aggressive treatment with Folfirinox was possible to achieve cure.
Today there are increasing reports of stage IV patients being pronounced cured. I am one of those that advocated for going well beyond standard of care 12 cycles in an attempt to achieve cure and being stage IV after having the Whipple procedure. Surgeon John Chabot of the Columbia Presbyterian Pancreas Center in NYC during the annual Pancreatic Cancer Awareness Day program made mention of the increasing reports of patients termed cure and my case was mentioned. Other oncologists familiar with my case concur.
I recently became aware of a large international study underway looking at patients termed by the NCI as exceptional responders to see what factors may have played a role. One of those in the study is someone whose case I am very familiar with. Like me she advocated for more aggressive chemotherapy. She did less then I did (37 cycles to my 46). She was non-resectable and now like me an 11 year survivor. She is surveilled frequently but I am not aware of the specific surveillance she gets. As for me, I have twice yearly MRI of the abdomen, low dose CT for the lungs and since 2014 have been having the ultra-sensitive ctDNA blood measurement to check for minimal residual disease. This test is orders of magnitude more sensitive than a CT, MRI or PET and is able to measure molecular residual disease-fragments of DNA shed by a metastatic cell that are traceable to the original primary tumor.
Replies to "I have to disagree with you on the statement that once stage IV, always stage IV...."
Very interesting & informative post. I will sure be seeing what my oncologist knows about the ctDNA and being pronounced "cured". He has been very sure that I understand that there are cells surviving and remission could end anytime. Needless to say, at this point I am happy to even be alive & have radiological remission makes me even more happy.
As a survivor and then you spoke of someone else with an 11-year survivor, did either of you continue with any type of treatments? I too have been told I am non-operable. Have not had a Whipple since mine started in the tail and travelled to adrenal gland and lungs.
Thank you for sharing your story. It is so rare to find someone to share concerns with about this disease.
I am so grateful for your posts and encouragement on this site. I had 20 sessions of folfirinox but the last couple of months showed CA19s creeping up even tho my scans showed stable disease. I opted for High dose CT guided radiation next and it helped for awhile and gave me a few months break from chemo but recent scan showed a small spot on my liver so it’s back to chemo-a different chemo than I was on prior to radiation. My new oncologist has been very informative and knows I want to be aggressive with this. I am meeting with clinical trial director regarding immunotherapy on top of chemo. Have never had any symptoms and still don’t except for neuropathy from chemo.
My question to you is, at any point during your folifirinix did your blood markers rise? Did you ever have to switch treatment along the way?
Thanks for sharing your experiences!!
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That's interesting. Here's my question: How do you get your oncologist to prescribe more than the requisite 12 cycles of Folfirinox? I am having my 12th cycle on Tuesday 10/31 (trick or treat!). My CA 19-9, which was pulled just before cycle 11 was administered, was 70. It has gone down every time, so with luck, it'll be down again with the sample pulled Tuesday, then down again when tested after cycle 12. If I test "normal," would an MD approve additional chemo? Would insurance cover it or deny it? To remind, I am stage 4, considered inoperable due to blood vessel involvement. I am not considered a candidate for radiation because of an undetermined number of mets. We're doing another CT scan without/with contrast on 11/8, and my oncologist plans to talk about maintenance therapy at our appointment 11/10.