Treatment is difficult but you enjoy every day because he has treatment, my husband has lung cancer and no treatment. His weak heart does not allow any treatment, I am sad and depressed, but I want to thank God for each day

Thanks for your wise words. You sound very secure in your faith, despite the hand you have been dealt. 

Hi 

I'm new to this forum but have spent a lot of time "venting" on the Macmillan Cancer Support Community. I have read several of your posts on here and they are very similar to my own feelings about "upbeat doctors" and how the treatment only seems to make my husband ill.
My husband was diagnosed with stage 4 non small cell lung cancer in May this year and we were told it is inoperable and therefore incurable. So he was offered combined chemotherapy and immunotherapy to hopefully slow the spread and size of the cancer. He was told there could/would be side effects but it was all made to seem very positive (which initially we were obviously very happy about). The cycle would be once every three weeks with a CT scan after three cycles.

His first cycle was at the end of July and he seemed okay, fatigue being the main side effect but then three weeks later his bloods showed a huge jump in his liver enzymes (Keytruda side effect which no one had mentioned) so he had to start a course of steroid treatment with twice weekly blood tests. He didn't have any treatment at all then until 21st October and we were both concerned that he may react badly again but once again the oncologist said he felt this was the best option and that it may give him "2 to 3 years" and they would do extra blood checks to watch for elevated levels and give him a dose of injected steroid at the start of treatment, so my husband agreed. 
He was so sick and exhausted for two weeks after the treatment, no extra blood checks, and when he went for bloods two days before his next treatment once again his liver enzymes were elevated not as much but still above the highest of normal, the oncologist decided treatment should go ahead but with weekly blood tests. He wasn't quite as ill this time but still had 10-12 days of feeling exhausted and we don't go anywhere or do anything. But like you we feel if it's what the experts say will help him have more time then we should keep going. He did have weekly blood tests this time which showed varying results for his liver and white blood cell count.
His next treatment should be today........ but once again his liver results are slightly elevated but now his white blood cell count is too low so they have cancelled his treatment till 30th December. 
He was quite well when he was diagnosed despite the cancer having spread to his lymph nodes and being classed as stage 4 and all that seems to have happened is that he's been made really ill, we are both feeling so frustrated and don't know what will happen if he can't have his treatment at the end of the month. 
Sorry this has been such a long winded "moan" but I know exactly what you mean about "is it worth it" and I also think that no one seems to want to give you an answer if you ask "what if we decide not to continue with this treatment what else could be done?" . My husband was very very positive initially but is now becoming frustrated and even angry at times because we can't plan anything around his treatment cycles (which was our hope) because he feels so ill for almost two weeks after it and worse the dates keep getting changed as they cancel a cycle.
I hope your husband has managed to start a new regime of treatment and that it's working better. I also apologise if this reply has come at an inappropriate moment.

Grasan

I hear what you are saying. We have now got to day 16/20 in radiotherapy + 2/3 keytruda doses. He is now very uncomfortable, struggling to eat or do anything. Liver enzyme levels up again from immunotherapy, so on some steroids to keep them low enough to keep taking next immunotherapy. I have everything crossed that this really does buy him a few years with just a 6 monthly PET scan checkup ... but we are told he can expect to develop cataracts from the radiotherapy, which will show up in 18mths-2 years, and side effects from the immunotherapy could crop up any time in the next 2 years... Still not convinced we are actually doing the right thing. (I think it might be covid precautions that have made me feel more excluded - when I take him to appointments I just sit in the car park - I have never met any of his specialists, so perhaps no surprise I have not bought into their opinions.)

I'm glad that your husband has managed to get some treatment although it's balanced by the negativity of the side effects. I was lucky enough to be able to go with Barry for his consultation appointments initially but I can't go with him for his treatment sessions. I agree that you do worry about whether the treatment helps or causes more problems. But like you we just go (lurch) from cycle to cycle hoping that it will bring a better result each time.