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

@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.

Hi again,
I started chemotherapy later than Bill, who began in August, and have had just six 48-hour take-home rounds of FLOT infusions, with the last two with Opdivo added in as immunotherapy just last month. I am 72 years old, had always been in good shape athletically until this cancer and treatment, so the weight loss and weakness is a new thing. Almost no appetite with this chemotherapy and so I keep shedding pounds, which I need to stop doing! Haven't done PT but try to take walks and move around. It's a challenge to keep the meals going. My son doesn't even feed himself well, which bugs me because how can I look after him now too. He is on antipsychotic meds which dull his incentive to accomplish much, and I've made feeding him a priority, which is nuts.
Anyway, have to take things day by day now, week by week, and aim to get through one way or another...
Hang in there!
Marcia

Yes I have..Not thebest to hear.Stage four gej adenocarcinoma and 3 lymph nodes.Just had 5th session flot plus Imfinzi immunotherapy.Sixth treatment in 2weeks then some ct and ct plus contrast.fingers crossed for some stability or shrinking I pray.Depends on results,might do alot more research.Best of luck and prayers to you.will keep posted.Good thoughts.

Yes I have, too. But it's for a different cancer and the schedule is every three weeks for the rest of my life. This inconvenience is further exacerbated by the fact that I have to fly to the clinic, stay in a hotel for two days, fly back home, and then face a 7-14 day recovery from the side effects. That leaves 1 good week or so before it starts all over gain. Do I think it's worth it? I don't know. I try to stay positive and thing of the trip as a vacation away from home. But the monotony of it all does wear on me. I also struggle with how to live in limbo. I can't make any plans and feel unmotivated to continue my research: I'm a field linguist who works in Mexico on an endangered language. This makes me anxious and very depressed to not be productive. I have been thinking about cognitive therapy to see if I can change my outlook and help me deal with this living on a hamster wheel. other than that, I find ways to do activities that I like even when I'm not feeling my best.