Hi does anyone know of successful extension of treatment for immunetherepy beyond the two year limit? 
Thanks 

Thankyou. Anymore info would be greatly appreciated. 

Hi Amanda,

This Tuesday just gone (15 March 2022) I had my 68th infusion of Pembolizumab/Keytruda.

I've been on this immunotherapy for a shade over four years now. Pretty good going for an initial prognosis of 6 months from a diagnosis of stage 4 NSCLC. Minimal side effects - I've been lucky enough to have years to trial-and-error ways to minimise or offset them.

By the end of two years I was stable, so theoretically I could have chanced coming off the treatment. On the other hand, "if it ain't broke don't fix it" and I was tolerating it way better than most so my consultant kept things going. Lots of Covid stuff at the time, too, so I'm guessing the "do no harm" option was also the easiest and safest.

While the primary tumour looks probably reduced to scar tissue (can't really tell without a biopsy) there is a very tiny secondary area that is growing slowly that they haven't quite been able to identify - jury is still out on that one though I'm told radiotherapy (cyberknife?) is an ideal candidate to zap it so I'm not worrying.

As best I can find out, Merck set the 2 year limit to make the drug look more affordable, and that was the number of doses expected to reach stability anyway. Partly clinical, mostly financial.

kind regards,
Steve
 

Thankyou so much. Which area do you live. Most information I'm been given is that treatment is for a maximum of 2 years. It's my mum that's on it, been a year now snd she's responding very well. 

Thanks so much for your response, so sorry to hear you didn’t achieve additional treatment.  Naive as I am I didn’t think there was going to be any limitations other than how a person responded so a bit of a shock for me.  

Good luck,  if you have any other info I would appreciate it.

thanks xx

Hi Amanda,

I live in central London. (I can't say which hospital, that's against the rules here.)

The NHS here did all the initial scans - everything from brain down to whole body, more than one a day, took the best part of a week all told. I was well impressed. After the verdict came in I claimed on my health insurance for treatment.

Kind wishes to your Mum. They don't prescribe immuno unless there's a good chance it'll work (they have a test for it) so if she's done a year responding well so far it's pretty certain she'll be able to complete the full 2 year course.

kind regards
Steve
 

Thankyou. I'm hoping to find a solution for after the two years. Obv subject her coping okay. Have you any idea how much the treatment costs ? Thankyou 

Hi Amanda,

It's horribly, prohibitively, eye-watering expensive. The 200mg dose of Keytruda comes with a list price of £7k. Going private would mean adding on the cost of blood tests, nurses, facilities etc - I've no idea how much they cost. Multiplied by repeating every 3 weeks and it kind of mounts up over time.

It seems to me that given that only 1 in 5 patients are 50% or more suitable for the drug, and that not all of them are able to tolerate it well enough to do 2 years on it let alone even longer, I'd have thought I'm in a very small very lucky minority. If that's really the case, the two year arbitrary cut-off for NHS strikes me as unfair, to say the least, and not really as cost-effective as NICE pretends.

kind regards
Steve
 

Yes, I am still doing fine thank you  and good luck to everyone here.