Question regarding “dead” tumor

what treatment did you use?

I was just told that I am in radiological remission which means that the pancreatic tumor is no longer seen, and the lung nodules are stable, some gone. My CA 19-9 is down to 20 which is good too. However, there will always be cancer cells that are microscopic that can cause the return. My oncologist says that once a stage 4 you are always considered stage 4. I am going for 3 more chemo treatments and another CT and then hopefully a long break but with monitoring like blood work monthly and CT every 3 months. That decision to continue with treatments or take a "break" for as long as feasible will be what I want & right now I am very much leaning towards the break.

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.

OK - I am not a medical professional, but what I have read from survivors is that many continue with chemotherapy - tailored, but they continue. Many for years. Terminating chemo, imo uneducated opinion, is not what I would do under like circumstances.

Some folks cannot tolerate more chemo, but in many cases they try to continue with the same chemo, vs tailoring.

I will again note, that unless you are being treated at a center of excellence for pancreatic cancer, you are not getting front line treatment - this isn't to say the medical professionals in your area aren't working hard and trying to do the best for you possible, it is simply because they do not specialize in pancreatic cancer - pancan is not like other cancers. It's survival rate is low - your best chance will always be at a place like Mayo (Rochester, not Jax or Arizona), MD Anderson, Memorial Sloan Kettering, etc.

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.

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.

I had 12 rounds of oxyplatin folforinox chemo and 15 rounds of radiation with chemo pills.

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.