Immunotherapy, what are peoples experiences

My husband is 2.5 years after surgery, I wish they had offered him immunotherapy. Second set of chemo and radiation therapy and it hasn’t got rid of it all 

I got the same tumer under control with chemo

I am also interested in the answer to this question if anyone has any experience. It was offered to me 2 years ago and I declined. Of course I have absolutely no idea whether this was the right decision and only time will tell. At the decision point I just weighed up the information I was given on my own histology,my age, and the statistics presented to me by the oncologist. In my own case I was not convinced of the benefits. I was supported in this decision by my oncologist. Having gone what I had gone through I just did not fancy another year of it. Decisions like this that you have to make as a layman are not easy. I hope it all goes well for you both.

Hello. I was diagnosed with the same cancer as your husband. Initially, I had a combination of Chemo/Radiotherapy. Unfortunately, due to the location of the cancer, they were unable to operate on me.

I was then placed on an immunotherapy drug called Pembrolizumab. This was administered every six weeks by intravenous drip over a year. I initially responded well and it halted any further spread. My cancer was described to me as being incurable.

Latterly, the immunotherapy proved to be ineffective and I am now dealing with the cancer spreading.

To be honest, I found the immunotherapy treatment to have little affect in my normal activities. I also didn't have any outward side effects.

The major factor for me was I couldn't have surgery which your husband has had.

I would say, in your husband's circumstances, it's worth pursuing/considering with further investigation. It may well assist.I hope that helps.

hi freckles, i was diagnosed july 24, after losing weight without trying, same pattern, food getting stuck, gp organised camera, then on the path again, but what a path.  so had the op, not ivor lewis, jan 8th this year.  think you just go into numb zone, just turning up for appointments, and treatment.  was put onto immunotherapy once every 4 weeks for a year. stating march 2025, had a couple of skin reactions, but that was it physically, just some cream and antibiotics sorted out slight dry skin/rash., similar to chemo, but no hair loss, i am on nivolumab but had 7 out of 12 so far.  i found the mental side harder, being back in the chemo ward where they mopped up after my masectomy october 23, under same oncologist took its toll.  but took the treatment with both hands.  this type of cancer that i had never heard of is a nasty little so and so, i asked initially how was this compared to breast cancer and a masectomy, and the surgeon, was very much like, this op to reconstruct your oesophagus is going to be like open heart surgery, i could do a masectomy in my sleep!!.  christ was he right.  But to be able to go out again and eat, rather than being sick and bringing up wall paper paste foam before the op, sick in bags, hand bags, fed by a tube for months to get my weight up to be fit for the op, was like chalk and cheese.  to even pick up a knife and fork and cook again for myself and my husband, was surreal and not taken for granted even now.

no hand book for this little sod, but plenty of old posts to help you through this, and the new club and forum family we have found ourselves joining.  if i can help further just shout.  its more stressful for me to flippin park prior to treatment, and more stressful to watch them find a vein, (dont want a picc line thank you) than sitting for 40 minutes while the treatment goes in.

some one said you are very lucky, not everyone can have immunotherapy, and even initially at first i thought, god now more treatment, and still being "a cancer patient", well for a few years we will still be that cancer patient with eyes on from the oncologists and ct scans and cameras, but thank god we are still here to go through it.  some lovely people that were my rock on here as well as every one elses, didnt get that far.

its daunting but some one close said "chuck the frigging kitchen sink at the horrible little s**t if you have too, whats 12 more appointments right".  all the best, lots of love and honest good true sound advice on here, and NEVER trust Dr Google!!

take care

Jules

Fantastic words as normal Julies sending love and hugs xxx

Keep fighting stay safe

Thanks for your reply Jules.

Everything you say resounds with us.

My husband has been so positive throughout this whole process so far...even post op on ICU but I think reality is sinking in and he's lower than he's ever been.

He's not a patient patient and gets frustrated that recovery is so slow. He still has discomfort from the op and gets tired quickly. He is trying to get a handle on the eating and drinking and is fed up about losing weight. I have to keep reminding him he is only 6 weeks post surgery and I think doing quite well. He is tolerating everything g he wants to eat, walking a mile with me and the dogs most days, no dumping to speak of. I think his main worry about treatment is that it will make him feel worse and slow down his recovery but deep down he accepts that if that's what he needs then he will have to get on with it. Fingers crossed he doesn't get any adverse effects.

I can only imagine how he feels he’s just got over one hurdle only to be faced with another which is not easy when you’re starting to get your life back together! For 6 weeks post op it sounds like he’s doing well I wish him the best xx

I have stage 3 oesophageal cancer and couldn't have the op. After chemo which was fairly brutal I've had oesophageal stents which means I can eat and drink. I was started on immunotherapy every 3 weeks 18 months ago. There are hardly any side effects and it seems to being very successful in that the tumour has remained very stable. No growth or spread of the cancer.  The course is for 2 years so I finish at the end of the year and then I'll be monitored regularly