Hello saundjl1

I'm afraid that I'm not able to answer your questions but it may be that our nurses are able to offer you some information. You can call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

Best wishes, 
Jenn
Cancer Chat moderator

Thank you 

Hi

Husband on treatment 9 of 24 now

From what I can gather after 2 years your body continues getting the benefit even without taking the immuno 

We'll see I guess, but this seems to be a world wide view

Looking for any info anyone else has 

hi I am in the same boat ,have just finished 2 years of immunotherapy and primary tumour shrunk 75%, have 2 secondaries, 1 in lung and 1 in thyroid.  Have a scan next week and a consultant appointment and then another scan in 12 weeks time . have been told for some people immunotherapy can cary on working and for others it does not , because the treatment is relativly new they are still finding out different things , I was diagnosed 3 years ago and was only given 6-9 months then i had immuno for 2 years , so i have now done 3 years and i feel quite well ,apart from the radio therapy which has damaged the top of my lung so have COPD , but looks like immuno is still working

Have been trying to find other people who have just finished immunotherapy after 2 years

Hello Andy,

my mum was diagnosed last year summer with stage 4 endometrial cancer and secondary lung, finished chemo but scan didn't show good result. The oncologist offered immunotherapy Nivolumb. Next week is her 3rd cycle. She is having side effects like pelvic pain and knee pain. Recently she is very nauseous and with  less appetite. I read your story and really hope for everyone to be strong as you to keep fighting. I find more difficult when i go to see oncologist with her.  
  Take care and be safe 

I have had 35 cycles of pembrolizumab finishing in November 2018. I was not allowed to continue after that on a clinical trial even though it was allowed for in the trial protocol, If you click on my posting history you will see the details.

The short answer is, nobody knows what the optimum number of cycles are. Merck for example, the manufacture of pembrolizumab 'recommend' a maxamimun number of 24, this ties in with keeping it cost effective for the NHS. However, they still have people from their fisrt clinical trial still taking it 8 years later.

I cant say much about finishing after 2 years as i am still getting treatment, I was given 2 to 3 months left

2.5 years ago and was put into a trial treatment. since then My tumors have shrunk considerably, i can eat and walk short distances.

The trial ended about 4 months ago but they kept me on the treatment.The major side effect for me is intense itching which became infected. I cant seem to get relief from it and cant explain just how intense the itching is. I have been given steriod creams that help a little but i have scars now where i scratch in my sleep.

All said and done, I feel good, having these extra years with my family.

I find it hard to talk about my illness to any of my family at times because i dont want to keep bringing them down with me when i get depressed, although they are great and try too hard to look after me.

talking to others at the treatment center seems to be the best way to share my experience.

I wish every one here all the best and my thoughts are with you all.

James