Recurrence after Whipple, Folfirinox and Sbrt

When she was initially diagnosed she should have had a blood test that uncovered any gene mutations that would show which therapies might work. Immunotherapy is a match for some mutations, but not all.

During her surgery there should have been enough tumor tissue retained for this latest testing need.
Might I ask where she is being treated?

Moffitt. But her surgery was done outside of Moffitt. I am having a hard time getting an answer about the tissue testing and things like that. Very frustrating.

Whipple is a one time procedure. The organs resected do not regenerate so it is impossible to do the procedure as the GI tract has already been resected and reconfigured. Metastatic disease has to be addressed either by more adjuvant chemotherapy and or other methods such as various types of radiation, Histotripsy or ablative technique. The choice depends on location of metastatic disease.

Next Generation Sequencing (NGS) can be done on a surgical tissue specimen and those are always archived for decades by pathology departments. If a fresh core needle biopsy is obtainable, it might show mutations that have occurred after chemo was done that conferred resistance leading to metastatic disease. NGS testing is done at specialized sequencing laboratories. Those labs are limited as are the very expensive instrumentation to perform this time-consuming process. The backlog and time in transit until receipt of specimens takes 3-4 weeks. It makes sense to wait for results as standard of care only gets standard results and survival statistics make it evident that targeted therapies, immunotherapies and clinical trials offer potential for a better outcome.

After I had genetic testing done, it identified a mutation that was targetable. It also told the oncologist the most appropriate chemo regimen to use and what category of clinical trials to search for. As a result, I have surpassed 12.5 years survival of metastatic pancreatic cancer and considered by leading pancreatic cancer oncologists as cured.

Thank you, that makes sense. May I ask where you were treated?

Following!

Great info and congrats on being a survivor! I suspect it has a lot to do with your research and advocating for yourself to get the best care. I learned a lot by going through it with my father and brother. Hope I never have to go back into research mode for Pancan.

I was treated at Weill Cornell Medical Center/New York Presbyterian. I worked at the Weill Cornell Medical College in the Dept. of Pathology involved with Cancer and Immunology research. That provided me with a solid understanding of cancer biology and treatment. I began my career as a medical technologist doing diagnostic testing in hospital clinical labs where I had a lot of patient contact. It was this experience where I learned the importance of self advocacy.

Self advocacy and researching latest treatments gave me the knowledge to make informed decision of my care to achieve a better outcome.

@stageivsurvivor based on your knowledge of this disease I would love your thoughts. Many say that they hold radiation “in reserve”. With the advances in radiation like SBRT and proton, as well as histotripsy-what would be the least dangerous approach to curtail some activity lighting up at a surgical margin the liver? That is, the least limiting for future issues that might arise?

Question not addressed to me and I can’t wait to read response from stageivsurvivor, but fir me based on anecdotal evidence from people on this forum is that it’s a 1x thing so if you have a situation where you have a lot or a few sporadic growths in your liver and especially new growths that keep popping up, then it’s not really going to be effective. It’s been about 13 months since my lesions were identified and I caught them real early on and started chemo and it’s been just the 2 and then 1 lesion ever since; God willing. I tried to choose a radiation specialist very advanced in this field and I actually found Dr. Percy Lee through a post somebody mentioned when he was at Harvard. In early January I’ll find out its effectiveness. Also, some of the procedures you mentioned work better on tumors versus lesions. Again, just my conclusions obtained anecdotally from posts and some readings.