Pembrolizumab (keytruda) Has anyone any experience of this please

Hi Have posted previously about my mum..she is receiving Pembro and has just had her third infusion. I would say overall she is stable and is better and no worse - we are waiting for the results of her first scan after the three infusions which we should get next week. However, her breathing seems to be worse and wondered if anyone else had experienced this..we wont know what is happening until we get the results next week but am just worried about this worsened breathing and fearing the worst.

Many thanks

Sharron

My mum is hoping to have this on a clinical trial at Christies but all depends on her kidney functions as she hasn't been in the best of health for last few months. 

Hope it works for your mum x 

Hi Pepperee,

I had my 3rd Pembrolizumab last a Friday.  I have previously had several chemos and radiotherapy over the 3 years I have been diagnosed.  Pembrolizumab is far better than any of the chemos but I suffer from the same tiredness that seems to be so prevalent with any of these therapies. No other major side effects though. My Oncologist is giving me a scan next Friday but did say that she didn't think I'd be this well if it wasn't working at some level.  I'm not counting any chickens as yet!  I am still breathless and have a cough but overall feel ok.

Good luck!

Lorna

Hello Wendy

I hope your mum manages to get it...my mum was actually very poorly when she started it and the Oncologist said she was the frailest patient he had treated so hopefully your mum may get it. My mum gets it through the NHS as it became available in January of this year - I don't think the criteria for NHS is quite as stringent as that for clinical trials so maybe your mum could get it through the NHS?

Good luck with it  xx

Hello Lorna

I hope your scan brings good news for you next week - fingers and everything crossed. My mum has had a scan and we are going for the results next week so hopefully it will show it is working or at least stabilising it.

Best wishes to everyone for Easter

Sharron x

Thank you Sharron, I hope it's good news for mum.  Have a Happy Easter.

Lorna x 

Hi Pepper66, how is your mum doing? My husband started suffering with weakness in left hand until he was hardly able to use it. Had an MRI scan last week and he has a small spot on his brain but accompanied with lots of swelling which they are targeting with steroids. Had a CT scan today of his lungs and rest of body to see if it is anywhere else and what the tumour is doing. if it's spread to other parts I got the impression they won't treat him. However if it hasn't and the tumour has grown significantly they will start chemo straight away if it hasn't then they will start stereotactic radiotherapy to the brain. All I can say is the good news didn't last long but we will keep fighting. My worry now is that my husband is showing signs of extreme forgetfulness, personality changes an generally not wanting to do anything.

Thanks Pepper66

just waiting for renal test results. Mum will only qualify via trial as she's not had any chemo, she refused it as knows it would probably end her life a lot sooner and reduce the quality.

sadly Pembro isn't first line treatment yet. 

Wendy x 

So in short, I had Stage 3 Hogkins Lymphoma 10 years ago and they managed to treat it.

Last year advance melanoma on my left arm.  Tired surgery but tumors keep popping up it seems so no such luck so now trying Pembro.  Going to have my 5th treatment tomorrow.  Not sure if it is working yet.  Side effects NOTHING compared to chemo, well, outside of the fact that it fried my thyroid gland between the 3rd and 4th treatments (for good) but no biggie if it works.

Not sure how to tell if Pembro is working, tumors will start to get smaller I guess but nothing obvious yet.

Treatments every 3 weeks.

Will have a total of 4 more treatments (eight in total) andif it doesn't work we'll have to amputate the arm.

Small price to pay for saving my life??

Hi 

My mom is also having this treatment she started September 2017 but unfortunately she had to come off it for a few weeks and she was really poorly. Mom had the treatment again 2 weeks ago but seems to be having some horrible side effects if it is the treatment causing it? The worst is her muscles and joints she is also very confused and sleeps for hours and hours just wondering if any one else has suffered like this.