Hi
I will have been on Pembrolizumanb for 2 years in December. I am doing very well on it and have been stable all the time with only small side effects. I am at the chrsitie and they say that after that in Decemeber my 2 years will be up and I will need to come of the drug and that this is NICE guidance. Does anyone have any examples where they are continuing for more than 2 years on the NHS?
It seems a waste of time and money to have another treatment that may not be as effective.
Thanks
Hi Prembro1,
I see that there is a petition asking the Government to look at this arbitrary time limit which only applies to pembrolizumab as treatment for lung cancer- not for conditions like Non Hodgkins or melanoma.
My husband has just started on another immunotherapy ( Tecentriq) and I see that the same two year duration imposed by NICE applies for this drug too. It seems very inequitable ...especially when you are a perfect example of someone who has done so well on an immunotherapy drug. Perhaps Roy castle could use their influence to find out the reasoning behind this ?
Sally x
Thanks for the reply Sally. The 2 year rule seems very unfair especially with what you say regarding no 2 year rule for Melanoma.
If there is a petition then there must be a reasonable sized group of people who are affected like myself. I too would like Roy Castle to become involved this area seems exactly what they are there for and for then to put some weight behind it with the right people. Lone voices like us have little or no influence on NICE decisions. The latest guidance I can find talks a lot about QUAL and money but nothing about continuing after 2 years which is very disappointing.
nice.org.uk/guidance/ta531/...
Has you husband completed his 2 years of Pembrolizumab and then moved onto Tecentriq?.
Pembro 1
Hi Pembro1,
My husband has just started immunotherapy . I understand that you only get Pembrolizumab on the NHS if you are PDL1 positive which my husband was not . Fortunately, that is not a NICE requirement for Tecentriq ( Atezolizumab ) ...you simply must have had platinum based chemotherapy that has failed . I would have thought they would at least transfer you to this newly licensed drug?
I have signed the petition and hope that Royal Castle will take this issue up on behalf of patients like yourself .
Best wishes ,
Sally
Hi pembro1
I am in the same position as you, my 2 years are up in June. I asked my oncologist about what happens then and he said “we just watch and wait”!! This seems such a gamble when Pembrolizumab has been so successful for me also.
I expect we will be hearing about lots of people reaching the 2 year years very soon which is sad that it is a blessing and a curse. Will follow your post with interest. Take care.
Hi I am the same 2years In may great results so far being told the same as you cheers Clem1
would i be able to email you , i am talking to a journalist about this , need some more people in our situation?
Yes no problem
My husband is in the same situation. I have written to NICE and it has taken over three weeks for them to reply so far. His 2 years are up in February. I would be happy to put weight behind a move to extend the two years.
Nice are useless they just said send back the guidelines. Love to speak more if u could on email or facebook. My email is micks41965@gmail.com . I am in touch with media. Trying to get some help
Found the petition you can sign it and share it through social media etc 🤞
Hi
There has been lots of discussion on the Lung group/Macmillian community site re stopping Pembro after 2 years
We all asked our oncologist in different parts of the country and we all got the same response, no more treatment after 2 years just watch a wait then if / when progression happens you are only given the choice of going back to Chemo, this applies to other newer immunotherapy treatments as well
A group has been set up on FB with a petition organised, search Pembrolizumab/ Immunotherapy trying to get enough signatures to pass over to Government
Sadly, from all the research into this it seems to come down to cost/ funding
Coincidence or not, but the new immunotherapy which has just been licensed, Atezolizumab is just starting to be given to patients now with advanced lung cancer just has patients are coming up to the 2 year mark of having to come off Pembro, is this swapping one cost for another with leaving Pembro patients with no treatment?
Margaret
Thanks for the replies from everyone. I will sign the petition and ask other to do so and look at the other sites mentioned.
It is very disappointing if we are simply asked to just wait and then on disease progression go back onto chemo. What a waste of money when a perfectly good treatment is available and other users such as Melanoma are unlimited.
If they allow us to go onto the new Atezolizumab that will be something.
Another question I will also ask of my ONC is what about private patients and if they are continuing for more than 2 years. If that is the case then its a financial decision by NICE not a medical one.
I do hope that Roy Castle are aware of this situation and are campaigning on our behalf as it seems it will be an issue for many people and grossly unfair to the group of patients they represent. It would be good to have some sort of response from them or something on the web site to say what is going on in the background.
Thanks all. I will keep things updated if and when I know a bit more.
Pembro 1
Hi,
Glad to hear from someone who has been treated with Pembrolizumab long term who has had good results. I have been trying to connect with someone like you in the hope of getting a perspective of what treatment on Pembrolizumab is like and what to expect in terms of side effects etc. I am completely new to this whole being ill thing, hospitals, doctors, tests- all alien to me. My bad trip started at the end of February and went through an 18 week messy nightmare with my local NHS trust before I finally, after four months of asking for a referral and finally having to go to the extreme of threatening legal action, got referred to Christie’s. I am still reeling after that experience - as if a cancer diagnosis isn’t enough to process! Because of the experience I have had my trust has been seriously eroded but so far I have received very professional care on every visit to Christie’s so fingers crossed. I have just started Pembrolizumab at Christie’s. I had my second treatment this week. I was aware before I started the treatment that it was only offered for two years. Unfortunately the first Oncologist I saw at my local hospital informed us of this time limit in a way that left us believing that I would not survive beyond that. It was only by doing internet searches that I discovered the limit is set out in the NICE guidelines and has everything to do with funding the treatment for each patient and nothing to do with whether the treatment is effective or not. I wasn’t aware that the two year limit only applies to Pembrolizumab treatment for lung cancer. This seems very unfair. I have signed the government petition and will ask others I meet to do so but it seems unlikely that it will gain any attention from parliament as it would need to reach 100,000 signatures before they will debate it. The Roy Castle Foundation should put its organisational shoulder behind it if it’s to get enough momentum to achieve that many signatures.
I wish you luck and hope you continue to be well.
Hi Llanigirl ,
Just to say I totally relate to the awful experience you had before you were seen and treated by the Christie. My husband was diagnosed on 9th June 2017 and we waited 20 weeks to see the Oncologist ..who kept cancelling appointments even when we were in the clinic waiting to see him. Eventually, after 2 biopsies , we were told he was stage 4 , and, due to poor kidney function they would not offer him any treatment at all. My husband was patronised and treated with no compassion or even basic courtesy. Thank goodness we got a second opinion at the Royal Marsden , who I cannot praise highly enough. I am so traumatised by the experience at the local Hospital that I just can't cross the threshold ...and I worked there for 30 years!! Good luck with your treatment ...we must all rally together to try to get this unfair 2 year time limit on immunotherapy drugs overturned .
Sally x
Hi Llanigirl
The Christie, its not a miracle place but and as you are finding out is a lot better local hospitals and one of the best places anywhere to be treated. Just get your head around "Chrisite time" and deal with the waiting it a volume operation.
With the treatment ignore the NICE guidlines they read like doom and gloom and as you can tell a lot of people have done two years on Pembro. Everyone if different though and has different results and side effects. I have remained stable and apart from a couple of days after treatment being tired and some other bits it been a lot better than doing chemo.
My tips are look after yourself as well as you can. All the usual stuff- eat good quality food, do whatever exercise you can and drink only a bit. Remember it a mental battle as well as a physical one, and find positive things to do which stop you thinking about it.
On a positive note there a new and improved treatments coming along all the time so you never know what might be coming down the line in a couple of years.
p1
Hi Pembro
You wouldn’t be allowed to go on Atezolizumab if you have already had another type of immunotherapy
Again NICE guidelines, it would be back to Chemo
As for paying privately I think you can pay as a private patient but would be very expensive as you would not get the discount the nhs negotiated with pharmaceutical companies
Margaret
I agree. I fininshed mine in June this year. I started the petition. Dont know if will help. But i need to do something. I am in contact with my mp and ccg. Nice are useless they just send out guide lines. Which we already know.
Any help with petition would be great.
Thanks
Thanks all.
I will keep this thread updated in a few days or so . Its a bank holiday weekend and time to put cancer back in its box for a few days.
Have a good one.
P1
Hi,
I've been on Pembrolizumanb for nearly a year and things are going well. Im already thinking what will happen at the end of the 2 years. The petition to start the debate about extending the times can be found at petition.parliament.uk/peti...
As mentioned below, if enough of us and our family and friends sign this it might make a difference.
Graham
Hi Graham, would you be prepared to talk to a journalist, i am speaking to one and the more of us the better to pressure the nhs?
Happy to talk to a journalist if it helps get some visibility on the issue
I hope you will still get this drug , if not maybe one better all the best to you
There's a petition. See below.
Well iam on only my 5 treatments on pembro and its working well and was only given it for 2 years but didnt think i could live longer but now hearing its curing cancers surley they cant take you off drug after 2 yr only for cancer to come back i have signed petition and thought roy castle charity would help all patients on pembro to keep on haveing it and go to news and papers about this .
Hi. They wont let you back on it. Nice will not help. I have a facebook group for pembro. Where we are trying to change this. Have you seen the petition?
Would be good to talk to you. My email is micks41965@gmail.com if you want to.
Mick
Five years on! 
Chemotherapy Cycle Two Weeks 2 and 3 
D Day
My diagnosis after 6 years, Lymphoma EMZL, AL Amyloidosis and Myeloma
Wheeze & cough for 2 years - I fear lung cancer!
