Starting Pembrolizumab soon

Ye I guess you will follow doctors advice on this one , like you im expecting a 6 or 7 so will be in the same boat . 

Hi Starlady - slightly reassuring to hear side effects are manageable for you. Hope I’m the same and lucky with minimal side effects. Start date is getting closer quicker.  

If you don’t mind me asking, how long does each IV session really wipe you out for or generally ok afterwards? I know we are all different so may not be the same.

Hope your doing ok x 

Hi Brizzle4eva

good to hear they got all yours with clear margins. You think you will go for the immunotherapy if offered? 

I’m doing ok thanks,  had my CT of chest, abdomen and pelvis last week before Pembro is started. Little nervous about it as feel pretty ok other than fatigue at the mo. Couple more weeks and back to work all being well. 

Hope your recovery from surgery going well x 

Hi Janey, I felt tired the day after the first one but I'm not sure if it was more the build up and a sort of relief after it. After the second I felt fine. I think with this treatment you are more likely to get delayed side effects, which you can't plan for, so quite inconvenient really! But then the whole thing is hugely inconvenient, ha ha! In the last couple of weeks I have started getting a dry mouth. I'm finding I need water or something else to drink close by at all times and dry foods are a bit hard to eat. So it's a bit of a nuisance but tolerable in the great scheme of things.

Do you have a date for your 1st treatment yet and where will you be going for it?

Thanks, yes I am getting there steadily, although I will try to get to see my GP next week to get a few more weeks off work as scar is still a bit numb in one place and over sensitive in another and fatigue is there but much less than it was.

I think it is a no-brainer to try the immunotherapy if it will help reduce the risk of mets popping up anywhere else. Will deal with any side effects as and when they occur. Still waiting for a scan date. 

Thanks Starlady, that’s really helpful to know. I’m already trying to plan back to work and trying to accept that this may be hard. Hope your side effects stay tolerable :)

If all goes to plan due to start on 22nd April at Bath RUH

Hi Brizzle, fatigue is a big one isn’t it. I’m hoping to go back to work soon, will be 9 weeks post op by then and reduced hours to start with to see how goes. 

I had all dates for everything come through at once. Was a woahhhh it all going on moment haha. Hopefully they come through soon for you :) 

Good luck with it Janey. I have got 4 more weeks off work now. I have had a date for my first appointment with urology/oncology at the BRI but it is 2 months away(!) and still waiting for a scan date so looks like any immunotherapy for me won't be until summer.

Hi Janey, did your first session go ahead as planned and how was it for you?

So first IV of Pembrolizumab done yesterday afternoon. I will do a blog thingy about all this, making rough notes for now and will do when my creative head is on and can focus.

Anyway - all good so far. About hour after it felt like I’d had too many coffees and some sweets. Possibly as the weight of the unexpected what is going on thing is now out the way and lifted off my shoulders. Woke up feeling ok, bit tired this afternoon in my normal need a nap time but so far so good

Onwards!!!!! 

Hope everyone doing alright x