Hi everyone, I have been following this discussion due to my husband being on two years of immunotherapy treatment, we have five sessions left.  So two weeks ago we had a face to face with his McMillan nurse and asked the question, why only two years?  This is what we were told.  All statistics show that giving further immunotherapy after two years is of no benefit to patients, regardless of a good outcome.  If you have responded well it is thought that your body may accept the changes caused by the treatment and keep reacting to how it now works after immunotherapy.  It has completely cleared my husband's secondary liver mets and shows no signs of recurring at the moment.  It's not based on money but the results that have been shown to be effective, In trials.  It seems that they will still keep scanning  and checking after immunotherapy and then have another look at what will be done should it return.  I hope this helps a little bit and puts minds at rest that we are not all being denied further treatment because we've had two years and that's it!  Best wishes to you all, Carol 

Hi

Just folllowing on from Carol's post above.

I too was told some of the same information, but the other points I've managed to find out is that after finishing your 2 years of treatment even if your cancer returns, as an NHS patient you will not be given any more pembrolizumab or which ever variation you happen to be on.  Should you be receiving this treatment privately it can continue indefinately.

I would love to be wrong on this info but I don't think so.

Jx

I have read all these posts and would like to contribute. I was diagnosed with stage 4 renal cancer which had spread to my lungs June 2018, initially I had my kidney removed followed by chemotherapy which I struggled with. My consultant started me with Nivolumab in June 2019. I initially was told about the 2 year limit. The treatment which still has its side effects has worked really well. When I last inquired about the 2 year limit (June this year) I was told that as it's working, and I can cope with it I will continue treatment. I can obviously stop any time I want to, and every 4 weeks I really think about it, but I then think of the alternative. I was told that if I stopped treatment I would be checked regularly, and if things deteriorated I could start the treatment again.

Whilst we all know we are individual and react differently to the same treatment, I feel I must share this with you. My treatment has and still is working really well. This treatment has given me more time than I expected with my family, particularly my wife who was diagnosed with cancer 6 months before I was, who has had chemotherapy, radiotherapy with difficult side effects. Now she is also on immunotherapy (not sure which one) and responding well with far less side effects.

I am under NHS Wales, and am wondering if this makes a difference with funding?

So very pleased for you, hope your wife continues to do well too.

I think you might be right about regional variations. I'm in Scotland.

First time ever I wish I wasn't!

J

That's such good news for you and as I said it seems it is s down to how effective treatment is and the way forwards after the two years have finished.  No one has said that we will not be cared for and we will accept that they are doing all they can.  It's not a guessing game, we are all individually treated and we should have faith in our oncologist.  We'll done, Carol

Hi Carol, thanks for your post,  both my oncologist and my hospital McMillan nurse have given me exactly the same information and as a nurse myself I am inclined to believe them, as a caring profession we don't tend to give out false information because it suits us.  I was diagnosed in 2017 and received two years of immunotherapy which ended in in September 2019. I have been extremely lucky and responded well to treatment which so far has halted the progression of my lung cancer and bone mets. 

I now have 3 monthly scans to monitor for any progression and then I guess we will look at alternatives. For now I feel grateful for the treatment I have received and for the extra time with my family.

Anyway I'm with Carol in wishing everyone the best and good luck for the new year, and in the words of that very good book **** off Cancer! 

Hi all, 

My Nan came to the end of her 2 year stint of immunotherapy for lung cancer  in March this year She had been doing fabulously and hadn't even had any side effects. 
she wanted to carry on but was told no due to funding. 
We were hopeful that she would remain cancer free.......today we had a nasty shock. She has secondary tumours growing in her stomach and the only treatment option is one type of Chemo which will make her very lll and will only give her months (if that) of extended life. So it's that or referral for Palative care. 
 

im raging mad, heartbroken and disgusted that the NHS have put a price on her life. 
Had she stayed on the treatment we wouldn't be in this position

Nobody has given us any advice regarding getting extra funding for treatment or how much it would be to pay for it ourselves.

We are desperate, can anybody help PLEASE. 

. 

Fingers crossed that this might be relevant to your Nan.

MHRA has approved Sotorasib (Lumykras) and NHS is only just starting to approve early access pending the NICE approval that's expected in March. It's so new your Nan's consultant might have missed it.

It's specific to NSCLC for the KRAS G12C mutation so it's not for everyone.

Google "news.cancerresearchuk.org sotorasib"

Wishing you all the best,
Steve

Hi D 1977 I have sent you a friend request as I have a consultant appt today where I believe he is telling me my 2 years nivolumab to end (melanoma). Thanks.