Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

Coming of Pembro

72Pembro
Posted by

Hi all,

New here only just found out about group. I have been on pembro almost 2 years with great results.


I was given 6 months in Nov 2015 and had 2 chemo's neither worked. Finally managed to get on a 2 year trial for pembro. It shrunk tumours alittle at first. But since then has kept them stable and no spread anywhere.


I will have treatment number 34 next week


But i have been told this is possibly my last maybe one more after it.


Also been told that even if after a 8 week scan after stopping treatment, if it starts to grow again  that i cannot have it to use anymore.


Obviously i am concerned and will be looking it to everything i can about this.


Hopefully it will remain stable. But i just wondered if anyone else has had similar experiences like this and if so what happened.


Hopefully hear back from any of you guys.


Thanks,


Mick

hen2446
Posted by

Hi Mick

Ime in the same boat as you, I will have been on Pembrolizumab 2 years August, I had 70% shrinkage ,stable then shrinkage again recently.

I’ve been told that ime off it August 1st and when it starts to progress the only way I can have it again is if they find a trial that’s using it.

Problem is most trials with PD1 won’t accept you if you’ve been treated with a PD1 so looks like we’re up the creek without a paddle ☹️


Frustrating knowing there’s a drug that keeps us stable and gives us good quality of life but we can only have it for 2 years isn’t it .


Pam xx

72Pembro
Posted by

I dont understand the logic  . I think it must be because of money. I am going to look into everything i can to find out.

Have you made any enquiries or pushed for answers at all?

I can't believe that we have a treatment that works and they refuse it to use. Its a scary time. Hope you doing ok

Mick

72Pembro
Posted by

Sorry meant to ask where about are you in uk. If you dont mind me asking

borderc
Posted by

Hi 

As far as I’m aware the two year decision was implemented by NICE and NHS follow the guidelines on this 

I’m due to start a new immunotherapy treatment soon and this one is the same as Pembroke can only stay on for 2 years while it continues working and I am well enough to carry on with it 

Whether the 2 yr limit is to do with funding I don’t know

Margaret 

Should read as Pembro 

hen2446
Posted by

Hi Mick

Ime from West Midlands, Sutton Coldfield, my hospital is very good part of the QE trust I first accessed the drug through the early access to medicines fund.  I think it’s probably to do with funding although I do know the NHS got it at a massively discounted price £26000 for 2 years of treatment , not bad considering privately it retails at about £6000 per injection or it did when it first became available.

I have questioned my Oncologist and tbf I think he felt aqward with the situation but apparently we can never access it in the NHS again even if we progress , our only options are trials using it or trials using similar drugs there is a trial recruiting atm for PDL1 Atezolizumab and you are allowed to have been treated with a PD1 previously, so we have to hope there will be something out there when we progress, it is really scary I wouldn’t be here now if it wasn’t for Pembrolizumab as chemo just made me sicker and did nothing to halt the cancer.

Pam x

72Pembro
Posted by

Thank you. Good luck with the treatment

hen2446
Posted by

You 2 let me know if you find anything new out

72Pembro
Posted by

Thanks Pam, i had mine in St Lukes Cancer centre at the Royal Surrey in Guildford. Then after 18 months moved to Frimley Park as it was then allowed for them tondo it. This a little closer to me

I have had conversation about it with oncologist too. Also quite awkward. I have asked for a definite answer as to why. He was unsure i am hoping he will look into for me.

I am the same as you i had two lots of chemo,well 1 and then halfway through a second which made my lung collapse and gave me sepsis. Lucky to be here now and if i had not got Pembro, also on a medical trial i would not be here now.

I hope you find something. I am going to keep pushing. I will let you know how it goes. Its good to talk to someone in the same situation.

Thanks again for your help.

Mick

Happy to have a phone chat if i get anywhere. But don't know how you would feel about that.

Mick

72Pembro
Posted by

Hi Margaret.

I forgot to ask have you had pembro or another immunotherapy then. Will this be youre 2nd one?

Mick

72Pembro
Posted by

So have you had one immunotherapy then Margaret?

Patch123
Posted by

Hi

My mum is coming up to 2 years on Pembro. It has worked so well and we are disappointed she is being taken off. Looking into other options. Please let me know if you hear anything. I understand the immunotherapy has a permanent effect on how your immune system works and the hope is the pembro does enough but I think the trial is at such an early stage 

hen2446
Posted by

Hi Mick 

Have sent u a friend request

Pam x

mummyb
Posted by

Hi everyone.

I’ve been on pembro for 18 months now and I’m dreading the day it has to stop.  It’s worked so well for me too.

My oncologist told me before I went on it that it would only be funded for 2 years, so it’s definitely down to cost.

I did read an article about this treatment recently that said your own immune system should have been trained by the two year mark and would be able to continue fighting on its own.  I didn’t read any evidence to back this theory up though.

I hope they have something else for us all ‘just in case’.


Take care.x

72Pembro
Posted by

Same here. I have 2 treatments left then now more.

I am going to do what i can  , if anything about this. As you say they say it should retrain our immune system. But its definitely a worry