Should I continue into a 3rd year of Immunotherapy if offered?

Hi Dots 

I don't have any experience with the treatment that you're on but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

There are lots of people in the group who are on the same immunotherapy as you so hopefully one of them will pop on and let you know what happened when they reached 2 years of treatment. 

It would be great if you could let us know what you decide to do as it'll be useful for others in the future.

Anne

Hi Dots

I did a reply to you but lost it! I am likely to get in the same position as you by the end of this year but I didn't expect to have to make a decision I assumed I would be just told that the treatment was stopping and scans would continue. I hope you can find a decision that you are at peace with. How often do you receive your treatment?

Hi Daisy,

Yes, you might be right: the decision might not be down to me. My oncologists are being vague about it (who makes the decision) - but only because there is genuinely no conclusive research (in my understanding) about 2 years versus 3 years. All of the clinical trials with Nivo immunotherapy are 2 years long. I get my treatment once a month. 

I have been reassured that the NHS does permit and provide re-treatment with Nivo if, if, if ('fingers crossed it doesn't' said my oncologist) the cancer becomes active again. I'm not NED at the moment but my cancer is not growing: everything stable. 

I like also that  - in another oncologist's phrase - 'it's not a Hard Stop' (after 2 years). They will still look out for me. I think I would like to stay on it for 3 years but my preference is psychological rather than based on real evidence, I think.

Hi Dots,

just seen your post and thought that’s me come the end of the year. My Consultant (Leicester) has told me they will give me a PET Scan around September/October to see how things are internally and make a decision based on it.

My tumours are not visible via CT imaging now and the big word is Stable. They cannot rule out they are still there as CT doesn’t always pick up smaller size tumours (according to Consultants) but the Team is happy with where I am.

I've been told the choices will either be, carry on into year 3 as my body is now used to treatment or stop until such time anything reappears. I was told that due to the length of time I had been on Nivo it is well embedded within my system that it would take a couple of years to totally clear.
Side effects have diminished somewhat now but muscles, joints aches and pain is very prominent, fatigue is now limited which is a relief.

Personally I will go with whatever they say but if I had the choice myself I don’t see any harm in stopping. I have lived longer than the 9-12months originally thought so anything now is a bonus.

we are in a unique position that the treatment has worked and had a positive effect on our lives and this hopefully helps others realise there is always hope to extend life.

i have just been on Holiday ( first time since June 23 ) and I felt so much better for being away from home and everything that goes with it. Fantastic sea air is a real bonus and has helped me mentally too.

i wish you well in the future, keep smiling.

Mole. 

Hi Mole,

What a wonderful message. Thank you for taking the time to post it. How wonderful that you are on holiday by the sea. What a great idea! I hope you will continue to enjoy the beautiful air and scenery.

I'll post an update on this thread in a couple of months about what happens next for me.

Dots