@angiegirl76
I was diagnosed with stage 4 squamous cell esophageal carcinoma in 01/19. I was also told that I was not a candidate for surgery due to my 35+ year history of MS and achalasia.

Following installment of my port, I had a good clinical response to radiotherapy and a FOLFOX chemotherapy regimen (folinic acid, 5 flurouracil and oxaliplatin) with marked reduction in all previously identified lesions and no new lesions.

Scans on 02/21 showed I had a recurrence of disease with metastasis to my right scapula, both kidneys and 3 new retro-peritoneal and para-hepatic nodes.

I was treated with another round of a more intense FOLFOX regimen and added the immuno-oncology drug,Keytruda. Unfortunately, the FOLFOX caused severe neutropenia and the Keytruda triggered a relapse of my MS after 3 doses.

I was hospitalized and in rehab for more than 2 months. I also developed esophageal strictures due to radiotherapy induced fibrosis and became unable to swallow solid foods or liguids. I had a G-tube placed. My scan prior to hospital discharge showed that I had a good clinical response to the FOLFOX/Keytruda regimen. My bone mets were gone, and my renal mets and retro peritoneal nodes were significantly reduced.

Due to concerns of worsening my MS, I resumed treatment with a less intense maintenance chemotherapy regimen of leucovorin (folinic acid) and 5FU for 3 months. This provided me some degree of control of my cancer while recovering from my MS relapse. Scans showed some progression of my disease so I resumed additional rounds of FOLFOX but had to discontinue the regimen after 4 cycles due to worsening neuropathy and neutropenia. Repeat scans showed a reasonably good clinical response with lesion shrinkage and stable disease.

Due to oxyplatin's worsening of my neuropathy, I was switched to a FOLFIRI regimen which I found to be more tolerable. FOLFIRI utilizes Irinotecan rather oxyplatin which minimizes the neuropathy. Studies have show that it is a slightly less effective but more tolerable second line regimen for esophageal carcinoma.

Remarkably, my last scan on 2/23 showed a complete clinical response with no evidence of active disease in my esophagus, bones, kidneys and no nodes. In addition, I've gained weight with a 2000 calorie/day G-tube feed of Nutrena 2.0 along with various vitamins and supplements.

When I was first diagnosed I weighed 175 lbs. When I was discharged from the hospital/rehab I weighed 122 lbs. I weighed 157 lbs at my last visit to the infusion clinic this past Thursday. I am not longer able to have additional esophageal dilations due to unacceptable risk of rupture. I've been totally non-po for more than a year and am totally dependent on my G-tube for all my nutrion, hydration and medication needs.

The point of my rambling response is that while your situation may appear hopeless at present, it is important that neither you, nor your husband give in to despair. Instead, you must encourage him to fight his disease as aggressively as possible. Never give in, never surrender! I don't know where your husband is receiving treatment but I would strongly suggest that he seek second opinions regarding his treatment. Also, if you haven't already done so, consult a nutritionist to ensure that he is recieving optimal nutrition and hydration. If possible, get him a physical therapy consult and get him out of his bed and doing light exercise. Walking, stretching, stationary biking and lite weight work have proven very helpful for me. Above all, you both must try to maintain a positive mental attitude (PMA). You will both get through this ordeal.
I just turned 70 and I am planning on being around for a few more years. I'm sure that your husband will too.