Pembrolizumab (keytruda) Has anyone any experience of this please

Hi

I had my third iv yesterday scan on the 10th so not sure if is doing its work.

So far so good side effects minimal.

Early days there are three people here that have just started it.

Hope this helps early days.

Take Care Ellie xx

Hi Ellie

Thankyou so much for your reply and your feedback...I hope your scan shows good results for you. My mum is just about to have her second infusion on Monday and like you a scan after the third one. Early days like you say but fingers crossed.

Take care

Sharron x

Good luck for your mum.

Its early days for us all, only just started giving it for lung cancer, got the go ahead 6th December

Any thing is worth a go nothing to lose.

Will let you know.

Ellie xx

Thanks Ellie..please stay in touch and good luck to everyone on it x

Hi pepper66 

I'll give you a brief summary of my experience but I have been posting regular updates on here that you can read when you get a chance.

i had my first two infusions without any side effects but did get a lung/chest infection that landed me in hospital. Wether this was related or not is unclear.

I had my 3rd infusion last week and had a sore mouth for a few days. After gargling with a strong salt solution it cleared and my mouths been ok since.

Fatigue is the nightmare. It started early this week and it's still ongoing. Other than that, I've been ok. I won't know for a while if it's working or not. I'm getting a baseline scan on Monday and my next one won't be for another couple of months. The infusions are once every three weeks and last half an hour then a ten minute flush. All in all, I'm only in the chemo unit an hour tops. A lot less time and far easier than chemo.

Hope this helps.

Good luck and take care.x

Hello mummyb

Thankyou for your reply..firstly I hope your scan shows good results for you..fingers crossed for that.

My mum has just had one infusion so far and due to have her second one on Monday and a scan after her third one. Like you she has experienced fatigue and is very tired all the time.  It is very difficult to get any definitive answers to my questions about it as it is such a new drug and everyone reacts differently. Early days but we are hoping for some positive results. She is quite frail due to a history of infection and complications the last 12 months since diagnosis and it was borderline if she was fit enough to have Pembro..it is hard to tell whether she is poorly because of underlying infections and the tumour or the side effects of pembro and wanted to see how other people were reacting to it.

I will have a look at your old posts and will look for any new ones from you to see how you are doing.

Take care and good luck with the scan for you xx

Good morning

My husband has had his 8 th infusion so far so good no bad side effects apart from tiredness and lack of appetite at beginning but that has now returned he has even managed to go to work a few times but this does take it out of him  he is due a scan next week so fingers crossed this will show positive results   I wish you all well hopefully this will have a positive results for all 

Hi my husband had one dose of Pembro at the end of November 2016. He had been suffering from a fever which started 4 days before receiving the Pembro and unknown to us he had a chest infection hence day after he had is Pembro he was admitted to hospital for two weeks with pneumonitis. 

His oncologist refused to give him anymore Pembro as they couldn't prove that it wasn't a major reaction to the Pembro or just the chest infection or a combination of both. We were extremely disappointed with this decision and felt that they should have delayed treatment when he was showing typical signs of infection. 

He was treated with a very high dose of steroid to combat the Pembro and was very well until he started to decrease his steroid intake. By mid January 2017 he started with diahorrea, lost his appetite and became extremely weak after several visits to his GP they eventually did some blood tests and was rushed into hospital due to his body shutting down.

Number one major mistake was and the oncologist realises this now is that he should have monitored my husband because has the steroid decreased the Pembro kicked back in and caused a side effect of colitis. Unknown to us Pembro can cause side effects 6 months after having received the last dose,and it's not about how much of the drug you have had its how it has changed the way you immune system works.

My husband spent another 9 days in hospital being treated with high doses of steroid. He is now home and took his las steroid Friday and he seems well.

The good news is whilst in hospital he had another CT scan beginning of February and his tumour has shrunk from 7.5cm to 4cm. We are over the moon. We have been told he will now have 12 weekly chest X-rays to monitor his tumour and that they cannot predict what will happen in the future because everyone reacts differently and it could be that we are in the same situation in 12 months time.

We have also been told that once the cancer becomes active again he will receive 4 rounds of chemo but after that the window opens again for Pembro as a second line of treatment even though he can't have anymore as a first line of treatment! This I can't seem to get my head around because why would you not give it again now but maybe in the future? Anyway just wanted to share our story and hope it makes you more informative of this new and hope inspiring drug.

Hello CCJ

Sorry to hear your husband has been poorly but that was great news about his tumour shrinking and I hope he continues to improve. That is confusing about him receiving Pembro as I didn't think they gave it at all as first line and has only just been approved as second line where chemo hasn't worked. Hopefully he may be able to have it again though.

My mum has just started to receive it and has had one infusion so far with just mild side effects. She isn't in the best of health to start with due to ongoing infections and problems since diagnosis last year and the consultant says she is only just well enough to receive Pembro. It is early days yet but we are hoping for positive results and it is interesting to hear of other people's experiences of it - thankyou for posting.

Take care and good luck and best wishes to you and your husband x

Hello Ellie

thankyou for your post..my mum has just had one infusion so far and has been very tired and initial loss of appetite. It is early days yet but hopefully we will see some positive results.

Good luck to you and your husband and I hope the scan results are good for you x