12 months free of disease with clear CT scans: What is next?

Hello & congrats on being cancer free! Just wondering if you have any lingering side effects, such as peripheral neuropathy, from the Oxiliplatin? Any idea how to prevent that or what helps if one contracts it during the standard 12 rounds of the 5-FU regimen? I’m starting on it on 4/10 and have heard so many neuropathy horror stories that I am terrified more of that than the cancer itself! A friend had this regimen for colo-rectal cancer. He is cured from the cancer but 5 years later still cannot feel his toes.

Thank you!

When I was treated for metastatic disease to my liver from 2012-2014, I was aware that in many instances metastatic disease returned after completing the recommended 12 cycles of Folfirinox. From a professional career in clinical cancer and immunology research, I had an awareness of minimal residual disease (MRD) and what the term NED means. One question I had was why 12 cycles were chosen. Coming from a research background I assumed there were clinical studies done showing the efficacy of doing 12 cycles. Despite a lengthy search, I could not find any scientific paper giving the reason why only 12 cycles was chosen and what the risk is of MRD resurfacing.

My search led to some of the clinicians that did the studies on Folfirinox and comparison studies against Gemzar and Gemzar plus Abraxane. And what I learned surprised me. Twelve cycles was chosen essentially by a consensus of oncologists whose opinion was it being an amount that most could tolerate will having acceptable side effects-namely peripheral neuropathy for a patient to achieve NED.

The term NED can be misconstrued as being “cancer-free”. What it means is that the disease has been knocked down to a point below the detection limit (threshold of sensitivity) that current imaging can not see MRD. There can be circulating tumor cells or disseminated tumor cells that have found a location conducive to surviving. As long as one’s immune system is robust, the hope is that it will keep any of these cells in-check. If the immune system is challenged or weakens, micrometastatic disease that had remained quiescent can resurface and the same or another chemotherapy regimen needs to be implemented.

It was for this reason I advocated with my oncologist to go beyond the 12 cycles-essentially doing as many as I could tolerate in an attempt to destroy any MRD and truly be cancer-free as in cured. No one thought it possible being stage IV and Folfirinox was only FDA approved in 2011…approximately 9 months before I was diagnosed. I was 55 at the time and my physical condition was otherwise excellent. I had no other co-morbidities, never smoked, did not drink and had a healthy diet. My oncologist agreed and he decided rather than get continuous Folfirinox treatments every 15 days, after 6 cycles the Oxaliplatin and Irinotecan would be removed to give my body a rest and hopefully lessen the neurotoxic effects of the oxaliplatin. After six resting cycles, I went back on Folfirinox and this alternating dosing continued for 24 months until a total of 46 cycles were completed (24 of Folfirinox and 22 of 5-Fu with Leucovorin. After a two week wash-out period, I entered a clinical trial for maintenance monotherapy. At almost 4 years I achieved NED and at 10 years was being told by a number of oncologists they consider me cured.

Was it the additional Folfirinox I had, the targeted maintenance monotherapy or a combination of the two that achieved a cure is not certain. What I do know is that going beyond 12 cycles and looking for treatment beyond standard of care likely made the difference. It was challenging going through that length of treatment but my physical condition allowed me to persevere. For those whose objective is long-term progression-free survival and having no significant co-morbidities, they should discuss with one’s oncologist about going beyond standard of care. I am not a datapoint of n=1. I have meet others that we’re dealing with metastatic disease and advocated for doing beyond standard of care. As a result, they have survived 5 or more years without any signs of reoccurrence.

thank you for all that info. Very encouraging. May I ask which cancer center you were at or your dr's name? My husband is being treated for stage 4 at Dana Farber in Boston. (diagnosed 3 mos ago at age 59). He has had 4 Folfirinox treatments. Dr said because he was healthy and "younger", he'd put him on Folfirinox, which he described as the "most aggressive" chemo. My husband has tolerated it well, and will be going for the 5th treatment next week. I don't like to get "too far ahead of ourselves," as we all live from "Scan to Scan". His first scan after chemo (last week) was mixed- a little shrinkage of tumor, and one lymph node shrunk and almost gone, but other lymph nodes showed some increase. But dr seem pleased with progress, and called him "exceptional case" because he does not have many side effects, and he continues to works from home 5 days a week, eats well, and we try and walk every day, at least a mile, sometimes more. He does get tired in the evenings and has that cold sensitivity issue, but other than that, he feels pretty good. His CA 19 has come down with every treatment, but still high. We totally changed our diet--no alcohol, no soda, very limited sugar, no red meat, lots of fruits/veggies/fiber, limiting dairy. So, I am thinking if my husband is doing well so far, maybe he is a candidate for the extended chemo, if and when the time comes... so I am interested in knowing whether Dana Farber was involved with your care. I will ask my dr. at next visit about this. At last visit, he said to continue w the chemo, but he didn't say for how long.

My primary oncologist for the aggressive Folfirinox treatments was Dr. Manish Shah who is the head of solid tumor oncology at Weill Cornell Medicine in NYC. Occasionally I was also seen by Dr. Allyson Ocean who is a pancreatic cancer specialist. Both also are principal investigators of clinical trials. I participated in a clinical trial at the Abramson Cancer Center of PennMedicine in Philadelphia. If a genetic mutation is driving the cancer, I would recommend Dr. Kim Reiss-Binder.

Sounds encouraging that your husband is tolerating Folfirinox well. It is considered the “gold standard” of treatment for pancreatic cancer. If he continues doing so well, he might want to advocate to go beyond the 12 cycles to address minimal residual disease that often remains after one is declared NED. Doing the extra chemo likely contributed to to my successful outcome.

Thank you so much.

Thank you for sharing your amazing story! Hats off to your self advocacy and research.

Hello & congrats on being cancer free! Just wondering if you have any lingering side effects, such as peripheral neuropathy, from the Oxiliplatin? Any idea how to prevent that or what helps if one contracts it during the standard 12 rounds of the 5-FU regimen? I’m starting on it on 4/10 and have heard so many neuropathy horror stories that I am terrified more of that than the cancer itself! A friend had this regimen for colo-rectal cancer. He is cured from the cancer but 5 years later still cannot feel his toes.

Thank you!

These are some links describing pro-active measures to prevent/lessen peripheral neuropathy-
NEUROPATHY PREVENTION WHEN TAKING FOLFIRINOX/ICING
https://www.uspharmacist.com/article/ice-chips-prevent-hyperalgesia-with-oxaliplatin
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7810270/
https://learn.colontown.org/topic/managing-neuropathy-and-cold-sensitivity/
https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.e16140
https://paltown.org/icing/
https://letswinpc.org/research/more-research-needed-for-neuropathy/
My oncologist used an alternate dosing cycles of six cycles Folfirinox followed by six cycles of 5-FU with Leucovorin and then repeat again with six of Folfirinox until a total of 46 cycles were completed (24 of Folfirinox 22 of 5-FU/Leucovorin). This lessened the impact of Oxaliplatin on the peripheral nerves and the neuropathy did resolve after several years.