Chemo every two weeks for the rest of my life?!?

@maraca
Hi, Marcia. Yes, his cancer is stage 4 with Mets to trachea, lung and behind his peritoneal cavity. He refused radiation due to family members fareing poorly from it and surgery due to things his Dr. Told him about the possible outcomes for his age (74). I think it may have been a god call on his part. He has had 4 hospitalizations since starting chemo...2 for infected colon and sepsis and 2 for GI bleed. He wants to try proton radiation at MD Anderson if he is a candidate. That is his next step! We are hoping the tumors are gone. Im glad youre getting used to the take-home chemo bag. Your journey sounds very hopeful to me. Its a blessing that you can still eat. It is very isolating to be denied food and fluids by mouth. But we have adjusted. Im happy for you that you were spared that. Blessings!

@billnclaire47
Hi,
I don't know what proton radiation is but hope it works for your husband and the chemotherapy shrinks his mets. Maybe it'll shrink mine. Have to do 3 months of this treatment before April Petscan.
All best wushes!

I've been through proton radiation at MDA. My total course was 5.5 weeks. However, mine was simpler - confined to esophagus, stage III, with no spread to lymph nodes. My PETs have shown continuing improvement and my last EUS showed no cancer cells in the esophagus or lymph nodes. Because their proton center had been down for a number of weeks, I had one week traditional photon radiation (IMRT). Believe me, if you can do it, proton radiation is worth it, for the side effect difference alone, both for physical well-being and damage to surrounding organs. If you decide on MDA, I'd suggest renting an apartment. The cost is much lower than hotels. We stayed at The Stella, which is very conveniently located to the Proton II Center...

@jimatgardencitybeach
Hi Jim- Wondering where you are currently being treated? My husband is about to start treatment with the same protocol in Grand Rapids, MI. We were considering a second opinion at MD Anderson but after reading your post I'm wondering if we don't need to. Thoughts?

@sjbeckham luckily for me I'm getting my treatments through the VA but at Tidelands Hospital Cancer Center, which is just south of Myrtle Beach, not a big place but luckily they have great doctors and staff. I went to MD Anderson which really was a great experience awesome folks there, but after they went reports and scans an visited me they were very excited with how my Oncologist treated me from my progress and stated at this time keep running the course I am on. I am doing the Folfox (not sure on spelling) and Keytruda, I went from liquid diet and loosing a half a pound a day to eating basically normal, I can eat a steak. My only issues now are neuropathy and because of sores on tongue cant do any spices or alcohol, even ketchup can hurt, but I am still here it will be one year this Easter for stage 4and we plan to celebrate by taking our little rv to the Keys and enjoy life for a week down there. Good luck and God Bless.

@sjbeckham, how is your husband doing? Did you decide to seek a second opinion at a cancer center of excellence or continue treatment closer to home?

Hello. I am the spouse/caregiver for my husband who also has Stage 4 Esophageal metastatic cancer. He has also been advised by his oncologist ( Grand Junction, CO) that he will have infusions every two weeks for the rest of his life. It is hard news to take. The cancer is aggressive, and thereby the aggressive therapy to fight it. He has not had radiation, but 42 hrs of infusions every two weeks since August, 2025 (chemo, immunotherapy, and target therapy. One day of this is at the hospital infusion center, and he wears home a portable infusion pack until the 42 hrs are completed.) He has had 13 infusions on the ""first line of treatment", and begins his 14th infusion tomorrow, where he goes "on maintenance", meaning one infusion segment is taken out which can affect a patient's neuropathy. (tingling in hands and feet). Aside from the side effects they will tell you about, he is doing well..maintaining his weight on the plus side and staying active. He had no pre-existing conditions, is 67 years old and works 12 hrs per week. The tumor(at the bottom of the esophagus at the junction to his stomach) began at 1.57 inches and has been reduced to 3/4 inch prior to today's CT scan. His platelets are still in the normal range. For Bill, despite the side effects, he has generally done very well. Yet, I do think whether or not this works for everyone would be on a case-by-case basis. But, personally, I also feel that for a long period of time, all that chemo can't be good for the body. All of this presents a mental and emotional strain. We each have a counseling therapist who have assisted us in processing all that this diagnoses has presented thus far.
Gail

Hello Gail,
Thanks for contributing here. Bill is lucky to have you! And good for him, still working 12 hrs a week. It sounds like our tumors, mine having been 5 cms, were similar in size and location. Why they skipped radiation for Bill was maybe the type of cancer? My squamous cell tumor was basically nuked out of its esophageal seat by the radiation. But I still have the "mets" as they call them, here and there, which maybe the chemo/immunotherapy will effectively tackle.
Over these successive infusions, just like Bill's every two weeks, I have mostly adjusted okay, except I am way too weak and tired to do much, such as work. I live with my adult son only, and he has a major mental illness for which I have been the caretaker many long years. Now that I have this cancer it isn't as doable.
The next scan I get isn't until April. I hope it shows no evidence of disease so I can carry on here! That's probably not a realistic wish, but I really want to get my mojo back!
Marcia in San Francisco

@maraca
Thanks for the kudos!
Bill is doing some strengthening exercises with our son a couple days per week as his stamina has been reduced . Wondering if PT might be recommended for you by your oncologist? How’s your calorie retention? It all plays into it, right?

@deengirl
Also, his cancer is a bit different, so radiation was not needed.