Hello taken off immunotherapy after 1st dose

Hi PAULINE70 I am not a member of this community as I don’t have kidney cancer, but I didn’t want your post to go unanswered. I am sorry you have had so many issues since your first dose of immunotherapy. I am not sure which immunotherapy drug it was - my own immunotherapy experience was with pembrolizumab for triple negative breast cancer. I think the similar PD-1 inhibitor nivolumab is used in kidney cancer but there are also others. Whilst these types of drugs can be game changers, they also unfortunately can cause a lot of issues. I also lost my thyroid, had kidney and lung damage and needed to stop treatment. I hope they have a way forward for you.

Hi thankyou so much for your reply. pembrolizumab was the treatment I had, I will be having 6 monthly scans instead. I am gutted but my cancer wasn't as aggressive as yours. Fingers crossed for you take care

Hello Pauline,my husband was taken off immunotherapy after 1 session, he was taken very ill a week later, confused, and muscle cramps, ( he could hardly pick a cup up as his hands were seizing up) and sudden poor mobility , sent to A and E for blood tests and his sodium level had gone very low, apparently his pituarity gland had been damaged due to the immunotherapy, hospitalised for a week, so  its not for everyone, take care.

Kind regards Ann

Hi thankyou for your reply, its caused too many issues for me, ill stick to the ct scans. Hope your husband is ok 

Good evening Pauline. 

I am sorry the treatment is not gone to plan. I hope the issues you had start to settle soon. Least having the scans gives the hope that if anything changes in the future it will be pick up early. Lets focus on the postive and thats the scans remain clear for the future. 

Take care. 

Jamie 

Hi thankyou for your reply, I ended up back in a an e last night, bad reactions to my thyroid treatment. Feels like its one thing after another at the minute. They need to get my dosage right was very dizzy nearly falling over. Hope youre ok 

Sorry again to hear you not been well. Thyroid medications take a while to find the right balance and dose at times. 

I am doing okay. Just fatigued amd getting tired quickly. But fighting through and back work on phase return. 

Thanks for asking. Always here to listen and supprt you. 

Take care. 

Jamie

Hi Pauline, so sorry to hear of the issues you’ve had with Pembrolizumab. I hope you are doing ok now you have stopped it. I am having my first immunotherapy dose next week (same drug) and am anxious about it. Gave it a lot of thought before deciding to try it, in the basis that I will stop if I can’t cope with the side effects