Esophageal cancer metastasized and spreading quickly

I posted back in March and we have new updates and need some input. The Opdivo treatment did not suppress the cancer and it’s taken a hold in his lymph nodes. Confirmed via biopsy it’s the same cancer and metastatized. Oncologist started him on FOLFOX this last Monday. Husband chose to do Xeloda in pill form versus pump. He did infusion and first dose of pills. 3 hours after he finished he had a very bad reaction - uncontrollable vomiting, profuse sweating (I mean A LOT), freezing despite having 4 blankets and a wool beanie on. He ended up in ER and it took them several hours and admitting him to get the vomiting under control.Has anyone else had this experience with FOLFOX?
We meet with oncologist next week and we’re a little nervous to proceed with this treatment plan. Can’t go to ER every time he gets treated…

Sounds like oxalyplatin side effects. Maybe they can increase the pretreatment, decrease the oxalyplatin amount or prescribe dexamethasone for 5 days post infusion. My husband had severe side effects with his first infusion, but with the above adjustments he did much better.

@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.

Your post has been very helpful. My husband was diagnosed with Stage 4 Esophageal cancer last Nov. 28, 2022. It had spread to his lymph nodes and a lesion on his right hip bone. He underwent 10 radiation treatments and is taking chemo/Oxiplatin/Immunotherapy. Unfortunately we do not live close to a Mayo Clinic, but just know your post has given me so much hope. I plan on speaking to his Oncologist re. Keytruda and Folfox just to see I this is an option.
Currently he cannot eat any solid food, only Ensures. We are supposed to see the GI provider this week to see if a stint can be place or what our options are bf we settle on a feeding tube. Since November he is down 100 lbs and continues to lose weight every 2 weeks when he has his treatment.
Thank you again for your post, the Oncologist told us he had 12 months to live back in Nov. So you can understand how this weighs on his mind. Thank you again and best of luck to you, OH and my husband is 58 yes young.

I am glad that I was able to provide you with some hope regarding you husband's on going battles with the beast. You don't need to live close to a Mayo clinic to recieve state of the art care. I am not aware of your location, but I'll bet that there are several excellent regional cancer centers near you that may be associated with regional academic medical centers or larger hospital systems. These may offer the same treatments and diagnostic workups that are offered by the Mayo Clinics. I urge you and your husband to take
ownership of his care and investigate all avaiable options in your local area. As to your husband's eating and nutitional difficulties I would strongly suggest that he have a G-tube placed rather than a stent. Stints are highly problematic. They often slip out of position and have to be removed, may cause tears in the esophagus, become overgrown with reactive fibrotic or tumor tissue and may cause continued pain and discomfort in the chest. A G-tube would allow him to avoid the pain, discomfort and complications associated with stenting. Also, you will be able to easily administer high calorie nutrition and supplements, maintain proper hydration and administer medications through the tube either by bolus injection with 60 cc syringes or feed bags connected to an external pump. I've had one in place for more than 2 years and I've been able to regain and maintain my weight (157 lbs) as well as recover a bit of muscle mass. I wish you both the best of luck in your journey with cancer.

I also had a feeding tube which was very helpful during radiation and chemo for esophageal cancer tumor limiting me to only sipping liquid. The tumor shrunk and now I'm cancer free. What did you take through feeding tube?