Hi D1977 and welcome to Cancer Chat.

I'm very sorry that your wife's immunotherapy treatment will be stopping in March.

Unfortunately I don't have the answers you're seeking I'm afraid but hopefully some of our members who have found themselves in a similar position will be along soon to offer their support and advice.

Do feel free to have a chat with our cancer nurses about this on 0808 800 4040 as well. Their lines are open Monday - Friday between 9a.m - 5p.m.

Kind regards, 

Steph, Cancer Chat Moderator

Thanks Steph,

As you say, hopefully there will be people our there in a similar situation who may have some ideas on this matter.

Hi,

My dad has stage 4 lung cancer diagnosed in March 2018. He has been having immunotherapy since April 18 and we were recently told his 2 years are up soon. We were never told this was a 2yr treatment in any reviews or appointments. My dad has responded exceptionally well to it taking my dad from a frail shadow of his former self to 'a walking miracle' as one nurse put it. We are stuck ourselves where to go from here or who to contact to give us anymore info. Would love to hear if you have any new info on this? Thanks

Hey averaz, 

I have sent a friends request, accept and I will message you directly.

Regards 

Dan 

Hi Dan, Averaz,

My grandmother is in a very similar situation. Coming up on her two years now and has been told she has to come off the drug. The drug has been a miracle for her and she has responded really well to the drug essentially keeping the cancer at bay.  
 

When she told me she had to come off the drug because it's been two years, I assumed this was because of medical reasons. However I can find no evidence to support this so it sounds like it's down to budget which is just ridiculous. 

Would love to know where you got to with this. 

Best,

Kris. 

Hello. I had my final immunotherapy last Friday and have been told hopefully it has trained my immune system to reject any further growth. I can't help feeling vunerable  as I have been so well for 2 yrs whilst on Nivolumab.

Whilst on the treatment I felt I was being proactive but now have an empty feeling inside is the only way I can describe my feelings. 
 

l will follow this link with great interest.

Hi Sheilamary,

Send me a friends request and I will message you directly. 

Regards 

Dan

Hi kris 

Send me a friends request and I will message you directly. 

Regards 

Dan 

Hello,

My wife was diagnosed with stage 4 bowel cancer February 2018 and given just a year to live, in September 2018 she was sent home to die after the metastatic cancer caused infection and necrotic tissue in her bowels. She was sent home with strong antibiotics to try to keep her alive as long as possible, after a few months things had stabilised and although she had huge tumours she was still with us. In February 2019 our oncologist approached BMS to ask for the nivolumab with ipilimumab combination on a compassionate treatment as her cancer was MSI-high and they agreed. A few months later and her cancer tumours had shrunk dramatically and we are a year into the 2 years BMS are giving the treatment for free. (Now only nivolumab as maintenance drug)

This drug is not funded by NHS for bowel cancer even though it's proven to work, so we are facing the time limit too with BMS's free treatment and currently no hope of NHS funding.

This is very worrying and so frustrating after the rollercoaster of ups and downs our lives have gone through. We have no choice but to try to find funding.

good luck all,

Andy

Hi

my partner is in a similar situation. His immunotherapy 2 year limit ended in January 2020. Sadly his cancer has already returned which meant radiotherapy during lockdown. We are looking into ways of continuing immunotherapy beyond the 2 year limit. 
It does seem unethical and a terrible situation for cancer patients to be put in. 
If you'd like to message outside the forum add as a friend.