Oesopahgus cancer and immunotherapy

Hi and a very warm welcome to the online community

I'm sorry to hear how hard you've had to fight for your treatment but it's great news that you've had access to an immunotherapy trial and that you're feeling well.

I don't have the experience you're looking for but I noticed that you have not had any replies to your post yet. While you're waiting for replies, if you type 'immunotherapy' into the search bar in this group you'll find lots of previous posts which mention it. You could have a read through those and respond to any of the more recent ones if you want to ask the poster any questions.

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You could copy and paste most of what you've said here into your profile or take a look at mine by clicking on my username to see the sort of thing you could add.

Wishing you all the best

x

Many thanks 

I will edit my profile. Thanks for coming back to me. 

Best wishes

Sara

Hi I am new to the MacMillan website and this group today and am pleased to have found a question re immunotherapy and oesophageal cancer. I was diagnosed in May 2018 but had undergone an endoscopy in November 2017 which did not show cancer but possible changes in the lining of the oesophagus. I was diagnosed with Stage 4 metastatic squamous cell carcinoma  (in lymph nodes too) and proceeded with 3 different types of chemo’ since including radiotherapy during the first Christmas. I am now undergoing immunotherapy (Nivolumab). Which one are you having? It was offered to me towards the end of lockdown as something the government would now fund. I have now had 5 treatments and a CT scan last week. This now does not show activity in the lymph nodes but some more thickening of the oesophagus. 
I feel terrible with awful constipation due to morphine for pain and this is the lowest I have felt. I still suffer some pain on swallowing but think the constipation (and management with laxatives) are making me feel v I’ll, The Palliative care team are very good but only talking by phone no face to face appointments which I find so disappointing now with v low Covid numbers in our area.
I still go to hospital for my treatment. 
I have had some issues with NHS over the time and feel I am the one that needs to be on top of everything. If you want to reply and let me know what type of immunotherapy you are having and how you manage emotionally and physically, please do. I am 61 and generally v fit but feel weak now and not doing Much. 
Thank you for reading. Sorry if it it long-winded and whingy.. Best wishes

Hi Penny61

Thanks for the feedback. So you were diagnosed in May 2018 so been quite a long time? I was only diagnosed in March 2020 and first lot of treatment was Chemo seemed to work for a while then didn't work, then had 10 radiotherapy and seems to have done some good in August. Have had two immuno treatments and yes it is Nivolumab and an Easy Access Scheme with Bristol Myer Squib. Not sure if it is the same one you are on but up to a year depending how the treatment goes. I am just hopeful it works as heard good things about immuno and quite frankly feel like gotta got with it and feel like my options are a bit limited and I am only 7 months into diagnosis. I've got Stage 4 oesphagus cancer primary and secondary in lungs. So Friday 13th was not a good day. 

Sorry to hear about the side effects, I am suffering from soreness and cough but think it is from the radiotherapy and not immuno but not sure as on a lot of treatment. The only thing I have from immuno is a gland that  did swell up in the neck literally the day after my first sessions and they said they need to monitor thyroxine levels but I don't have constipation although did with chemo. I have started face to face with oncology but only once a month it is an option and I have insisted on it. In terms of getting on immuno, I have fought tooth and nail to get on the scheme, completely helped my a friend who has really pushed me to investigate. It's Bristol Myers Squibb with NHS so not sure if it is the same one as yours just hope it works. I have had issues with NHS but nurses and ward staff are brilliant it is just some individuals that have no bedside manner and show little empathy about very horrid situations for those that are suffering both physically and mentally. And I do think they become somewhat that you're a patient they the doctor and are a bit robotic about it and wonder how they would feel if it was them. I could never be a consultant faced with all this heavy stuff but guess when people get better must be so rewarding. 

Physically I am 53 and was always fit. Tennis,  horseriding  and lots of country walks. Worked in the film industry in London for 20 years where my life was quite full but moved back to Devon 10 years ago and sought a more peaceful life. Ironic now. So physically I think given the trip I have had in  7 months I have dealt with it quite well. Have felt really bad a few times but haven't suffered being sick just reflux,soreness, breathing issue and swallowing and wonder some  days what the next side effect will be. Emotionally I think I have a positive disposition really, although had my low times that are sporadic when I think about leaving family and friends behind but I kind of try and not think about now as it is too sad and think about enjoying my days with them now and no pressure. I do feel I could carry on for a while and those low times normally come at night and as I said are momentary. I also still find the whole situation a touch surreal as never thought this would happen although it is so common and we all dread it. So I do have hope for the immuno as have to as not sure of alternatives. I do hope your treatment turns a corner although sounds like there has been some positive outcomes. It is a bit of unknown territory especially with oesphagus. Would love to hear more as time goes by as finding someone on the same drug and cancer is good as doesn't seem that common. 

Best wishes 

March13

Hi March 13, thank you for your reply. It seems a long journey for us all. I kept v fit and as well as I could almost until this last month or two. Pinning it on Morphine for pain and its corresponding constipation. V tired to which is a side effect of Nivolumab. I have secondaries in two lymph nodes but these weren’t identified during my CT scan last week.

 I am under the Royal County Surrey Hospital in Guildford. I think generally all my treatment has been v good but with lockdown and no face to face appointments it just isn’t as efficient.

Keep positive and I hope you keep as busy with your life as it sounds you used to. I retired a few years ago and looked after my granddaughter for 3 years before she went to nursery. I worked as a teacher of English to adults after retraining. Now yoga, photography and gardening... 

all the best,

and kept in touch 

Penny61

Hi Penny61

I do find it hard to attribute which side effect to which treatment I am on. Currently have aftermath of radiotherapy so no idea. Saturday night had a bit of a blip after doing so well and back in hospital. Think it was combination of side effects and me being a little confident with eating food with a v temperamental gullet. So back in hospital with aspiration pneumonia. I felt a bit down about coming back (fourth time in six months) but then got on a ward that I like and know the nurses and finger, if I have these blips come in get sorted it might just be a few days in six weeks and at the moment I am not working so do able. Wth side effects down know what I am dealing but I do feel like my nodes around clavicle have disappeared but no scan yet so god knows what is going on inside although after three days feels a heck of a lot better and due to be discharged tomorrow. Then hopefully next week off to St Ives for a few nights with my best friend. If I don't feel well I won't go but hoping will be fine, stlll feel the need to do stuff when I am well, I want to do activities with the people I want to spend the most time with. 

I haven't really had too much pain and I know morphine is not good for constipation, there are things you can take to aid that which I use and keep it at bay as very uncomfortable.

I'm at Wonford in Exeter and whilst I had months of telephone conversations, I'm know having face to face as making the most of it whilst still on offer with covid chaos. 

I am under treatment so now on Stat leave from work. Not sure what to do about that long term as not sure where I am long term. I worked in London for over 20 years, working in the film industry which I absolutely loved but was a lifestyle rather than a job and began to hate London and crave countryside. So moved back to Devon where I was brought up and love it although hard getting and normal job with CV like mine. Took me 10 years to finally get a full time job and then this happens.

Anyway, keen to keep in touch and see how our treatment progresses I hope it settles down for you and I hope I stop having blips and get into some sort rhythm. 

All the best

March13