My early days of treatment

FormerMember over 4 years ago

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Hi all. Just sharing as it might help.

Started chemo and immunotherapy 4 weeks ago for stage 4 lung cancer which had metat..... Mesast..... Metats...... Erm... Spread to my spine ribs lymph nodes and sacrum. Treatment is palliative only and hope to give us a year or so. Anyone approaching this similar experience may find this useful. As all of you I was given a stack of written information. I missed the following.

I was OK for first two days and went for a walk. Only about 30 minutes. Sunny day and burnt my head and face.... Really sore. Missed the warning for that. Get a hat and creams. Then I got constipation. Bad. Got necessary laxative but it was a very uncomfortable couple of days I could have done without.

Then got a rash which necessitated two visits to hospital and eventually a course of steroids. 60 grms a day. These made me very loud!

I only got chemo last week for second course until I can be weaned off steroids. Steroids caused oral thrush which is still very paimful. Sooooo. Make sure you make note of the side effects and check yourself every day. I could have avoided a lot of discomfort if I had paid more attention. Like me, I'm sure everyone is concentrating on the neutropenic sepsis warnings. Any.. Good luck to you all....

FormerMember over 4 years ago

hi Ifors, welcome to the room. not many had the mix of chemo/ immunopherapy i think it is a new allowed mix. i had chemo then radiotherapy. it worked for 12 month then my tumour came back and put me on immunapherapy. have been on over a yr and feel ok. sounds like your having it a bit rough. re the creams i didnt bother but suffered for it. hope you pick up soon. thank you for sharing. TC

FormerMember over 4 years ago

Hi Ifors

Welcome to us. I hope the treatment goes well and smoothly for you. That is great you can share your experience on this type of treatment as we have not heard from many on it. Hoping you have got on top of the side effects now and are feeling brighter.

FormerMember over 4 years ago in reply to FormerMember

Thank you for that. I hadn't realised the immunotherapy part was so new.... But in reacting to my symptoms it was clear that it is still a bit trial and error. They weren't sure what caused rash but acknowledged that the 60mg dose of steroids was too high and that it is taking 3 weeks to wean me off them. That has caused the extra side effects of lack of sleep, mood changes and probably very sore throat.

FormerMember over 4 years ago in reply to FormerMember

Thank you very much for your kind words. It seems that the combination treatment is so new that the oncologist is learning as we go along! I've mentioned side effects some of which were avoidable by me acting more promptly but there was sooooo much to read. Anyway I'm cracking on and would love a steak but due to painful throat I'm having to make do with jelly. It's not the same......!

FormerMember over 4 years ago in reply to FormerMember

So good I did it twice......

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My early days of treatment