Thinking of withdrawing immunotherapy

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Hi all,

My Dad has been receiving immunotherapy for the last 5 months. He has lost so much weight from it, probably about 3 stone and has very little appetite. He is also struggling to get food down and has had ulcers on the back of his tongue! He is so weak, very breathless and tired. 
He has always been a man on the go, now he is bed ridden or sofa ridden and he is starting to get bed sores.

He has a scan on 3rd Jan and then results 9th Jan. 
I feel he would be better off not receiving this treatment, as i feel it’s bought on more suffering than anything else. 

Has anyone else experienced the same thoughts or has anyone else withdrawn treatment?

  • Hi  

    I'm sorry to read how poorly your dad has become whilst on immunotherapy and it sounds like he needs to take the opportunity of discussing this with his consultant at his next appointment.

    I had a different type of cancer, and wasn't offered immunotherapy, so can't help with his decision making but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be easier to spot.

    While you're waiting for replies, it would be great if you could put something about your dad's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Hello, my husband has just had his 15th immunotherapy treatment, next scan is end of January. He has done amazing until now, his HB has gone really low and he is exhausted.  Has anyone else experienced this I wonder ?  May have to have a transfusion… but the shrinkage was huge on the last scan. Of good news again with the scan, maybe side affects can be managed ? Can they not be managed for your dad ? 

  • My husband has had severe side effects to immunotherapy. After around 5 months of treatment, he developed what is basically type 1 diabetes and will be insulin dependant for life. The next thing was psoriasis on his scalp and now he has adrenal insufficiency and will have to take steroids for life. And steroids and diabetes are not a happy mix. The good news is that pleural effusions have completely stopped and the nodules/pleural thickening has reduced by a third. We are now wondering whether to keep going with the Nivolumab but drop the ipilimumab as it is the combination that seems to cause more adverse reactions. It's a very, very difficult decision and has involved a lot of discussion with the oncologist who says there's no data to help make it. I'm not sure if that helps but it's really to say that side effects are not uncommon,  some are life changing but most can be managed so do discuss with the oncology team as once the treatment has been stopped for 3 months, it can't be re-started.

  • Hello, after 17 immunotherapy treatments and no side effects upto the 16th my husband also needs steroids for life.  Had a terrible few weeks. Our scan showed slight progression so stopping immunotherapy.  When fit again back onto chemo with another drug added …..

  • So sorry to hear that. It really feels like a pact with the devil. I hope you get better results with the chemo. Sending hugs.