Immunotherapy ends

Keeping the strain in your life secret must be so hard on you. I rather forced my husband's hand into being open about treatment from the beginning, even when he's feeling OK, because I didn't want to try to keep it secret. I especially didn't want friends and relatives suspecting or finding out 'by accident' at moments when we didn't feel up to explaining. Even though we don't keep the treatment secret, we don't talk about cancer day to day, beyond a "how are you today?" I am a planner by nature and can't help analyse all of the what ifs in my head. Some of those are about caring for him when (rather than if) he gets sicker, and living a future after he is gone, which I know he is not about to discuss. I admire his optimism (denial/life in the moment) but its not how I am.

I've been staring at the two year cut off on immunotherapy coming up for us.The only person I have known that had the same treatment, for a similar cancer, started to go downhill pretty soon after coming off immunotherapy - but I know the path is rarely the same for two different people. I guess you have similar worries. On the other hand, the immunotherapy takes its own toll on the body. Even if someone is feeling OK during it, overworking your immune system would seem bound to wear it out faster than it should. So it makes sense that you wouldn't just continue it forever, even if cost were not an issue. We went into the process saying that the best outcome for us would be two years of immunotherapy buying us two years after that of life without any cancer treatment. That is the hope I am clinging to.

And when it all gets too scary, I look around at how we are now and say to myself "but everything is OK today, so just get on with today."

Hopefully the specialist can help you with the "what next" questions. If not, then seek a second opinion at a different hospital. I've found a facebook group for sufferers and carers for people with my husband's specific cancer, which has been a great resource for understanding the path of the disease and the trials to ask about.

Hi

i have just seen your post when I searched for immunotherapy.  I wondered how you both are and weather your husband is having other treatment.  I a,so wonder which cancer he had and which immunotherapy he had.

In our case my husband has Mucosal Melanoma. He tried the ipilumab+nivolumab combination first, but after one dose had a liver reaction that forced us to change course. He's had Pembrolizumab every 3 weeks for just over a year now. That seems well tolerated. The jury is out on whether it is effective - waiting for another investigative surgery next week.

My husband is on cemiplimab (Libtayo) he has  squamous cell skin cancer stage 4 he had all his lymph nodes from his neck removed but then it spread to lungs and lymph nodes in the chest.  He had 5 tumours after 4 treatments of immunotherapy some had disappeared and the others really strunk. However they wouldn’t give him his last treatment because his platelets were too low at 42.  I have been trying to find out if anyone else had this problem.  Apart from that he had no other side affects.  I wondered as well what would happen if they stopped the treatment altogether.

it’s difficult isn’t it.  I hope all goes well with your husband I think we are lucky that there are so many new treatments 

You all have so many facts, meds names & finer details. I don’t know what meds my husband had, he had 2 full years on Immunotherapy with the last dose in November. His consultant seen him to finalise the treatment and talk about the after care. As the journey started during covid he was on a trial of 6wkly doses rather than the standard 3wkly. It would seem this has helped reduce the tumour sizes, and stop lymph nodes doing what they do!
he’s now in that limbo period of monitoring only, watching for any changes through 6wkly bloods & 12wkly scans. Dr Ali is delighted with his trial group who seem to have good results.  I know this is merely extending life but for now he’s well, stage 4 but well. 
I don’t know what will happen when the body stops fighting and I know he won’t tell me if he’s in pain, he seems to think he’s shielding me but you know the pain of watching and waiting for the next step, 

I can only offer strength to this group, every day I cry, I scream inside for the lost chances we’re facing but for now I get up, go to work and try to squash a whole lifetime in a couple of years, cos we’re still here and that’s something. 

It’s really hard being the partner/wife/husband of a person with cancer, we don’t know what’s going on and all we can do is watch, wait and see.  I am quite lucky in the sense as a family we do talk about it although I’m not sure if it helps because you have to be the strong one and be positive when he side you feel like you are dying too and you don’t want them to know.  My husband is quite well considering but I often wake up in the night checking to see if he is breathing and any little cough is a worry but at the same time you can’t stop living or keep away from family for the fear of catching something.

we keep busy even in the process of moving, we still plan.  I watch my husband’s diet making sure he eats all the right foods with a few naughtiest.  At the moment I am trying to find away of getting his platelets up so he can get back on course with his treatment.  I make him have his fruit and veg every day!

this treatment is quite new and I want to know how successful it is and the chances of staying clear for a few years.

take care everyone.

tomorrow is promised to know one. X

Hi

i just wondered how your husband is?

Hi

i just wondered how you were doing, there seems to be very little information on how people do once treatment stops, sending love

Treatment stopped 22nd August for us. Tumour progressing to far + too fast, and tried every current UK option. Now on hospice care at home. He sleeps mostly - only weeks left.

So sorry to hear that, take care of yourself x