I am due to finish 2 years on Pembrolizumab in January as 2 years is the time limit. I just wondered if anyone has experience of how things go following this time.
I'm not panicking (yet) but hope someone may have some words of wisdom.
My husband is undergoing immunotherapy and he is currently on Keytruda. We are not sure whether Keytruda is working for him or not because his first scan had shown a slight enlargement on his main tumor which is on his right lung and no change on lymph nodes and bone met. However I would love to join you and patients which have finished their 2 years treatment and currently in a wait and watch position. I think it's really cruel to deprive people from something what can save their life just saying that " there is no evidence immunotherapy works after 2 years treatment and you cannot stay on it more than 2 years".
The evidences shows that it is possible to stay on Keytruda for more than 2 years and there are people who did 4 years on it.
Please read the story below and you can find that in USA they are able to undergo even double immunotherapy but I cannot understand why in UK where is so many people are suffering from this horrible diseases cannot be eligible for more than 2 years for immunotherapy.
Stage IV NSCLC adeno diagnosis March 2016. Two solid tumors in upper right lobe; left metastatic pleural effusion with small subtle nodular areas of pleural thickening, mediastinal lymph node involvement. No mutations. Low-grade (indolent) Non-Hodgkin Lymphoma (NHL) diagnosed at same time, ruling out most trials for fear of contaminating trial results. I'm being treated at NYU's Perlmutter Cancer Center.
April 2016 - June 2016 Carbo/Alimta (4 cycles), some minor shrinkage and then stable.
July 2016 - Alimta Maintenance (2 cycles).
August 2016 - start pembro (Keytruda) since PD-L1 expression is 90%.
June 2017 - new tissue biopsy. PDL-1 expression down to 60% from original level of 90%. High tumor mutational burden (22). No actionable mutations. Keytruda continues with generally good response.
February 2018 - Scans continue mostly stable; multiple bronchoscopies between July 2017 and Jan 2018 show lymph node invading trachea. After wait and watch for six months, could no longer ignore. Suspended Keytruda after 24 infusions while doing 33 sessions of IMRT (66GY).
April 2018 - radiation finished. Scan at 4 weeks shows improvement across most radiated sites. Restarting Keytruda and will scan again in 8 weeks.
June 2018 - second scan post-radiation shows some reduction in radiated lesions, but also shows pulmonary fibrosis (scarring of lungs). CEA down from 601 pre-radiation to 25 currently.
January 2019 - CEA, which had fallen dramatically from 601 to 18 in months following radiation, now climbing again (currently at 84). Oncologist thinks inflammation somewhere, not necessarily progression. First PET/CT in 13 months (had been having CTs with contrast after radiation). One primary tumor significantly reduced in size again. Everything else stable or slightly smaller. PET uptake lower across all lesions since last PET. Chronic headaches led to brain MRI which showed a small (2mm) met. Gamma Knife done. Keytruda infusions continue.
March 2019 - follow-up brain MRI shows met is gone. Neurosurgeon saying we'll repeat MRIs every three months for two years. CEA has fallen to 47, down from 84 in January. Brain met radiation likely responsible, although can never be sure.
June 2019 - Keytruda continues (infusion #44) and scans continue to be stable and even some incremental decreases across all areas we're watching.
August 2019 - After 47 Keytruda infusions (just started fourth year), most recent scan showed progression. My PD-L1, which was 90% expression when I started in August of 2016, is now down to 5%. Waiting for recommendations on next line treatment. Feel like I've been spoiled with the long run and very few side effects from the treatment.
October 2019 - 49th Keytruda infusion was my last. Moving on to double-immunotherapy (nivo/ipi) due to progression. Other choice was Abraxane with Keytruda, but keeping that in my back pocket if the double-immuno doesn't work.
Yes, it is about money. My comments here may not be popular.....
NHS drug funding is finite as is total NHS funding.
I believe there is a separate cancer drug fund from which our treatments are allocated. It would be lovely if that fund was limitless but it is not. Do you take money from somewhere else in the NHS to bolster the amount of cash? How about less heart surgery for children, scale down A&E departments even more?
Perhaps the actual cancer drug fund could be re-allocated? Would you like to choose between giving treatment for childhood leukaemia, pancreatic cancer, lung cancer. I certainly would not.
I do not know how NICE decide but it has to be an objective decision, taking into account the statistical probabilities and with a consensus of technical opinion and the amount of cash that is available.
Treatment in the USA is vastly different from the UK, it is very dependent on money. (That opens a whole new set of separate questions & discussions.) Yes, I know that a lot of our new immunotherapy drugs have come from American companies so it is useful for us here to know of any developments in the USA. However, how many people know of the work of Francis Crick Institute in the UK and its consequences?
Just to say I am being treated with Pembrolizumab now and I still have more than a year before my treatment will be stopped. However, I cannot foretell the future and do not know if the drug will continue to work or not. It may be that it stops working and I will not be given it for the full two years: I hope not but one cannot foretell the future. I do have faith in the NHS that if Pembro is stopped that I will be helped with my disease.
I agree with all you say. You make valid points about budgeting and allocation. The part that makes this unfair however is pembro is given for melanoma too and for as long as it keeps working for (i.e. no two year stop).
Hi Gina, Yes that does seem unfair. Does anyone know the scientific/medical reasons for that? I assume that may having a bearing on the decision. I also wonder about statistical info; how many UK melanoma patients suitable for Pembro and how many lung cancer patients who also suitable? Which answer goes back to money and therefore how much of the pot we get to share....
I had another thought about Pembro funding; we do not know the terms of the agreement between Merck and NHS for buying the drug at a discounted price. Of course one of those terms will be total non disclosure of the agreement! It is unfortunate that we will not have all of the information to be able to challenge the NICE decision.
Yes Melanoma is given for as long as you need it.No one is saying take treatment option from others, just a fair system for lung cancer. It is the biggest killer and has one of the smallest budgets.
I know I’m coming at this from my own personal space and I can understand the argument about immunotherapy costing the nhs, However, I will still get more treatment when my cancer starts progressing. My onc said most likely chemo again.
I had immunotherapy for 2 years with no side effects at all. So there were absolutely no additional costs involved. When I had chemo, I was totally wrecked. The nhs has to fund many more drugs for the side effects, for nurses to come out and administer treatment, for inpatient stays in hospital etc. Surely the costs are balanced out when you take all the extras into consideration.
I’m not asking to have immunotherapy continuously, just that I could go back on it again when the cancer progresses.
And that is exactly the same what I think about. Chemo destroying whole body, it has a very severe side effects and moreover it takes away a life energy, however immunotherapy is much better than chemo. So why lung cancer patients cannot be put back on immunotherapy if their cancer is back or if the certain drug did not work out why they cannot be switched to another immunotherapy drug.
