I am in the uk and due to have to stop my pembro next week, not my choice but they will only let me have 35 cycles( 2 years)
i was wondering if anyone near or in same situation in the uk or any outside the uk that have had longer than 2 years.
Would love to hear back
Sat, 06/09/2018 - 07:59
Welcome to GRACE. Perhaps someone who has taken/is taking pembrolizumab will share their experience, but for now you may find helpful Dr. West's post on how long to continue immunotherapy which you can find here.
As Dr. West mentions, even if you take a break and your cancer eventually progresses, it is not uncommon to return to a therapy on which you did not progress while on treatment. Patients using targeted therapies face the same dilemma, since after a long period of use it is unclear whether the drug is keeping the cancer under control or there is no remaining cancer left.
Sat, 06/09/2018 - 08:18
How do i find the Dr West post?
Sat, 06/09/2018 - 08:20
Just click on the word "here" which is a hyperlink to that post.
Sat, 06/09/2018 - 08:33
Welcome to Grace. I'm sorry you've got this issue. Have you discussed the possibility of extended use due to the durable stability? Are there side effects that are of concern to your onc such a inflammation in your lungs? Does your onc suggest a better alternative?
Normally when an anti cancer drug is working and isn't causing intolerable side effects it is continued. Since it's a new drug for lung cancer there aren't many people outside clinical trials who have taken pembro longer than 2 years. For some it appears checkpoint inhibitors continue to work after treatment is stopped sometimes for many months. Could it be they want to give you a break to watch for continued efficacy post treatment? It's possible to scan every 6 or more weeks to watch closely for change and when progression happens it can be caught early enough to start treatment again.
I'm not in the UK and can't speak to how one goes about getting a change in standard of treatment. In the US it's the insurance companies that dictate what gets paid for so it's the insurance company that ones doctor consults to get approval for individualized alterations to standard of care. For everyone this is a brand new problem that few people will have encountered. It may be best to find a different issue, similar in structure to yours and see what channels others have taken.
Please keep us posted, I'm interested in how this is handled.
Sat, 06/09/2018 - 09:21
Thanks for your reply. I have no side effects. Just get a little tired. Never had to miss a treatment in whole 2 years. I was put on it as a trial. NICE & the NHS here in the uk put a year funding on it. Although i went on this before it was approved by NICE. It was given to that nhs at a massive discount to trial. You are right
Not many got to the 2 years on it, this is the problem it is new to the medical guys too.
But my incologist has said i will not be given it again or be offered another immunotherapy as the drug companies dont want to use you if you haf one already. I have found a few others not far from 2 years on it in the uk.
I am happy to leave it and have scans then if any growth be allowed to go back on it. But have been told this wont happen even if i get worse.
NICE are to review this in Jan 2019. That maybe to late for me. So i am trying to get as much information as possible. Need to fight this decision.
So lots of work to do.
Sat, 06/09/2018 - 15:59
I would want to know what options for an exception in the nice system exist. Ask your onc what she would do if it were her in the same position. Sometimes doctors will give very different answers when asked what they would do if it were them or their loved one.
It appears on the pembro trials aka keynote___ have been conducted in 2 year blocks which is likely the reason for the 2 year supply you are limited to. In the US if you know to do it (many don't) a phone call or email to the pharma that makes the drug in your case Merck usually helps you get the drug. That's in the US but with you and the others 2 years out and doing so well there's likely someone at Merck who would like and can get you the drug.
lots of luck,
Sat, 06/09/2018 - 16:07
I will put it this way to him on wednesday when i see him , good idea thank you.
I have contacted Merck and had a reply. Apparently it is uk law they cannot answer my questions and it has to come from my oncologist. I have asked him to contact them on my behalf. I believe he has. But i need to push this when i see him. Il let you know how i go.
Sat, 06/09/2018 - 18:24
I hope Merck responds in a helpful way, Mick, and you can continue with Pembro treatment if you need it in the future. Please let us know how it works out for you. I am sure there will be others in the pipeline in the UK in the same position one day soon.
I must admit I don't understand why you would be excluded from other immunotherapies as standard of care, which is different than a clinical trial. Is pembro the only immunotherapy funded by the UK for lung cancer? Is there an upper limit on the total amount of lung cancer treatment the UK will support or is it just specifically 2 years on pembro which is the limiting factor for you?
Sun, 06/10/2018 - 03:29
Not sure as to why i would be excluded. I need to find out more. Thats just what my oncologist told me.
Il keep digging see what i can find
I will let you know how i get on.
Sun, 06/10/2018 - 05:31
Just a random question i referred to earlier. In the Uk due to medical rules Merck are not allowed to speak to me directly it has to come through my gp or oncologist.
Just wondered if this was the same in the States
Sun, 06/10/2018 - 07:18
I'm not sure about the existence of any specific laws about any direct contact, but I would think that a drug manufacturer would want to avoid the appearance that they are providing you with medical advice, which would clearly be prohibited. With that in mind, they would want to speak with your medical team and avoid that issue completely.
Sun, 06/10/2018 - 08:43
There are telephone numbers and websites for US patients to contact drug manufacturers through their compassionate use programs to get medications that otherwise would be impossible to afford. However I haven't seen any online information for patients who are outside of the US, at least not in English.
These webpages are always paired with separate information for health care providers as per what Jim said. In the end the request has to go through a provider also in the US, but it isn't illegal to have contact with patients.
Sun, 06/10/2018 - 09:11
When insurance company denies payment for a procedure or drug the doctor who prescribed it is usually the person to convince the insurance co to pay.
You mentioned you took this drug at least in part as part of a trial. Is pembro approved for treatment in a case like yours? and just for 2 years? or is it that the trial is over and the drug is no longer available at a price affordable to nice or nhs.
Sun, 06/10/2018 - 09:39
to answer at least part of my own question in my previous post, from NICE website, "It was also agreed that the drug should be used and then stopped at two years if a person’s disease has not worsened." http://bit.ly/2JDPbm6
That's all they say about how long to give the drug.
Last week this was added to the website, http://bit.ly/2JKkk7m and http://bit.ly/2McturI
Perhaps with the excellent results in the trial (in think keynote 042 or maybe 189) and the timetable of june 18 mentioned in the guidance review approval/contracted prices will be available sooner than January.
Have you read these documents? I'd need to understand the system more carefully but it appears nagotiations for pricing is the main issue and with the results so good I'd bet Merck wants you to take the drug for as long as you can.
Sun, 06/10/2018 - 09:54
I will have a read of that. It is the drug for my condition. I was on the trial at massively discounted price from Merck. My oncologist is not sure of anything at the moment as all new ground.
You are right it mentions the 2 years limit, but says very little
Sun, 06/10/2018 - 10:16
click on "project information" in the cdf page (the last link) and find project team lead Kate Moore with a NICE email address for "any" inquiries. If you carefully title and word your email you may get a response about possibilities.
Sun, 06/10/2018 - 11:38
Ive sent an email explaining my position..will update you if and when i get a reply.