Maintenance Chemotherapy for the rest of my life?

apologize in advance for the length of this post, but I'm two days out from my last full dosec FOLOX chemo regimin and am feeling it's full GI and chemo-brain effects.
In response to your query about " life time" chemo therapy, perhaps my clinical history will give you a bit of hope and guidance in your battles with the beast.

I was diagnosed at Duke Cancer Center with stage 4 ESCC in January 2019. I had 2 primary tumors located at 31 and 42 cm in my esophagus and several mediastinal and abdominal nodes. The initial prognosis was grim. Yet, I had a remarkably good and sustained clinical response to SBRT radiaton therapy and FOLFOX chemo therapy. My tumors and nodes were eliminated and the other nodes markedly reduced in size and PET intensity.

I was maintained on a gradually tapering dose of FOLFOX to minimize worsening neuropathy til scans in 02/21 showed a recurrence of disease with lesions in both kidneys, scapula, humerus and several abdominal and retroperitoneal nodes.

In an attempt to regain disease control and stem its spread, Keytruda was added to a full strength FOLFOX chemo regimen. I suffered a catastrophic adverse immuno- reaction to Keytruda, the effects of which I'm still dealing with. I was hospitalized and in rehab for over 3 months during which time I recieved no chemotherapy or other treatments. I also developed severe esophageal strictures which required placement of a G-tube which I still have in place.

Thankfully, my pre-discharge scans from rehab showed that I had again experienced an excellent clinical response. All previously demonstrated metastases and all but one abdominal node were essentially gone.

Due to my debilitated condition and neuropathy, we decided to utilize FOLFIRI for maintenance chemo therapy. I was stably maintained on this regimen for several years as demonstrated by serial PET and CT- MIPs scans. Based on these results, we decided to continue to sseveral cycles of full intensity FOLFIFI and then utilized a slow down titration of the bi-weekly FOLFIRI regimen. The last 3 quarterly scans prior to 10/09/24 showed no evidence of disease.

Unfortunately, my last scan on 10/09/24 showed recurrence of disease with a mediastinal node near my aortic arch and two abdominal para-aortic nodes near the renal bifrucation.

While, frustrating in the extreme, we decided to resume chemo with full strength FOLFOX to regain some degree of disease control. I also sought 2nd opinions re various surgical and radio-chemotherapy treatments as well clinical trial opportunities at MD Anderson.

In MDA's opinion, due to prior intense radiation of my affected mediastinal areas the risk of radiotherapy, including Proton beam were deemed too great as they would likely induce esophageal fistula and bronchial injury. They suggested surgical removal of the mediastinal node.

As to the para-aortic nodes, they suggested the most appropriate therapy would be a total dose of 35-50 Gy administered via a 10-15 fractionated dose IMRT regimen rather than proton beam therapy given the nodes location and proximity to loops of my bowel and spine. After, these treatments and scans, they recommended maintenance chemotherapy with bi-weekly FOLFIRI. Careful attention will be paid to my CBCs and CMPs for evidence of toxicity and reduction in dose intensity should this occur.

I was also offered a slot in a phase 1-2A trial for a new oral compound that targets the CHEK1 oncogene and its signal transduction pathways. If I chose to participate, I would have to forgo further radiotherapy and chemotherapy treatments and recieve treatments at MDA in Houston. I felt this posed to great a risk of disease progression along with costly logistical/travel expenses.

I returned to discuss the results of my consults with my oncology team at Duke. They concurred with MDA's recommendations. I'm scheduled to recieve my 4th round of FOLFOX next week and am scheduled for a 15 fraction IMRT regimine starting the 2nd week of Dec.

After scans to check for clinical response, to IMRT, I'll be scheduled for surgical removal of the mediastinal node. I will then resume maintenance chemotherapy with FOLFIRI with the possible addition of targeted EGFR or FGFR agents.

The main point of my lengthy discourse is that EC be it adeno or squamous cell, is a tricky beast of a disease. With appropriate and aggressive therapies, you can wrestle into a state submission or indolence, but rarely is it truely curable but in more than a few individuals it can be managed as a chronic disease til inevitable epigenetic or mutational changes occur and you disease becomes resistant to your therapeutic regimine.

Yet, hope for sustained remission and improved disease control and possible cures are on the near horizion. In the interim, if you've experienced a good sustained clinical response and stable disease on your current chemotherapy regimin, with periodic monitoring via scans and ctDNA levels, you may be able to experiment with reduced intensity regimens and occassional short breaks in your therapy cycles. Should indications of disease progression be detected, then you might resume full intensity chemo regimens with adjuvant therapies or repeat targeted radiotherapies if possible.

In the interim, maintain a positive mental attitude and resolve to own your disease, not let it own you. Ultimately, everyone dies, so make the most of the time you've been given. I wish you well in your journey with your unwelcome fellow traveller.

Thank You for sharing your experience I appreciate the words of encouragement. Sounds like you have had a long hard journey.
I hope and pray everything works out for you.

I had great family support and continued with exercise, and made some changes to my diet. I also wore costumes to chemo, so was always on the lookout for a new costume. Tried to make the process less stressful. Family and friends gave/loaned costumes. Everyone copes uniquely. Best to you.
Rachel

@droberson1915, welcome. May I ask more about the phase 2 clinical trial you're in? Is it a new chemotherapy protocol being tested? Were you able to take a lower dose although it is a clinical trial? What side effects were you experiencing?

Gosh, that's a lot of questions when you just entered the virtual room. Feel free to only answer what you wish.

The test medication is Neratinib 40 mg. I went from 9, to 6 , to 3 pills. The side effects were extreme diarrhea, nausea, vomiting. After lowering the dosage, the side effects have gotten better.

@bryan18603, the length of a chemo vacation is worthy of a discussion with your oncologist as there are several factors to consider, including your personal preferences. I would start with a list of questions. Let me get you started.

- If side effects become untolerable or I have a special event coming up, could I take a chemo vacation?
- What are the risks and benefits of taking a break?
- What monitoring would you do while I'm on a break?
- What would indicate I should start chemo again?

Then, I would share with the oncologist why you'd like a pause in treatment. Here are some examples to give you an idea:
XX ____ side effect lowers my quality of life. I find it hard to _____. I miss being able to ______.
or
My daughter is getting married in June. Would it be possible to skip a chemo session so I can be free of side effects for the celebration?

What do you think?

Thank You for your help!!
I really appreciate it!!