Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

Pembrolizumab experience

Richard 1944
Posted by

Does anyone have experience of the immunotherapy drug Pembrolizumab? I will start on this treatment in a couple of weeks, mainly targeting the large tumour in my liver.

Herothedog
Posted by

Hi Richard, I also belong to the BCAN Inspire group which I log into via Facebook and just had a quick look for you. In USA there seem to be a number of folk on this drug via a "Keytruda" trial. Not sure if Keytruda are the manufacturers. There are quite a lot of comments from patients on their experiences which seem positive. It's always worth doing a bit of research I reckon. Good luck. Hx

Roobarb
Posted by

Hi Richard, I’ve a rare kind of ovarian cancer and had pembro at the end of the year as part of a clinical trial so thought I would say how it was for me....for me it was super easy, very different to chemo, a quick infusion every 3 weeks.  My main side effect was my thryroid stopped working but they just give you pills for it and carry on.  I was tired but not chemo tired and went about my normal life.  It did make me feel pain, around the tumours and on an old surgery scar, at the start of each infusion but then it went away. Sometimes people get itchy skin & tummy upsets but I didn’t.

some folk do have bad side effects but I think lots of folk don’t.

its a bit unpredictable in the way it works, some folk, it works straight away, others it can take a couple of months to kick in.

in the end I had 4 lots but then I progressed so came off (but I was on a trial so do not be alarmed by that).

theres a lot of people on the lung and melanoma forums and it is very successful for them so I wish the same for you, when it works it’s amazing!

Very best of luck!

Roobarb
Posted by

Oh and I’ve tagged as i know they have been on it for ages and seen a response x

KTatHome
Posted by

Hi , I’ve popped in to this group to wish you luck for when you start Pembrolizumab/Keytruda. I have been on this drug from April 2016 to April 2017 and then from June 2018 onwards. My cancer was metastatic melanoma in my left ovary and pelvic and abdominal lymph nodes. I have had minimal side effects, an all over body rash, two weeks after my first dose that delayed my next treatment by a week and one bout of diarrhoea along the way. Oh and I get tired for about 4 days after each dose, I don’t like to label it as fatigue, I just feel at half speed, and if I just low on it takes longer to get back to normal so as I’ve been on it for what seems forever I just pace myself.

 I became a complete responder and so came off treatment for a year and after a recurrence in a lymph node(s) I was put back onto it. My story is in my profile if you click on my user name. There’s a helpful video about having immunotherapy, side effects and reporting them by the Lancashire Hospital I will put the link in later in case it’s useful. Oh and a Macmillan link to Pembro info. I’m about to move from 3 weekly to 6 weekly treatments with double the dose, I am hoping with a bigger gap life will feel more normal for me, otherwise it’s been 2 hour long trips to get to hospital every 3 weeks. If you have any questions just ask and i’ll pop back, or the ask an expert section might be of some help ? 

https://vimeo.com/252355507/00d629311d - Immunotherapy Lancashire Teaching Hospital.

https://www.macmillan.org.uk/information-and-support/treating/targeted-biological-therapies/find-your-therapy/pembrolizumab.html#337155

Best wishes

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

Richard 1944
Posted by

Thank you so much for your helpful reply. I have bladder cancer which spread to the lymph nodes, liver and lungs. Chemotherapy shrunk all tumours. The Atlantis trial drug rucaperib has failed to work. Bladder and lung tumours are about the same but the liver tumour has doubled. Oncologist suggested Pembrolizumab to start in about two weeks.

KTatHome
Posted by

Hang on in there Richard, and I hope Pembro works well for you as it did for me. 

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.