Starting Pembrolizumab soon

I am doing the "blog thing", but I haven't shared it outside this forum.  I took a long time contemplating it, but the over-riding reason was for my fine young people (18 and 21 at the time in 2022) so they could see what was going on, historically.  Also, like you say, for others going through the same thing.  I've had some lovely feedback from people on here.  Finally, I realised once I started that it's also beneficial for me.  

Good luck with the pembro!  I'm sure the surgery was the bigger event though.  

Good luck to you . My appointment is in six weeks after a Radical and seems I will be having treatment too as T3A and tumour was large. Did your Docs strongly advise you to take this treatment . ? . Also did you have positive or clear margins . Hope all goes well anyway . I’m not sure to ask about prognosis at my appointment . I just can’t make my mind up about that , did you ? 

Your blog is fab . I will be getting my wife to have a look at it later. 

They said was my choice, gave me the info and within 24 hrs decided yes please.

I’ve not asked about prognosis. I’m very lucky and technically they got it all and ‘cured’  but don’t know if anything escaped. Only time will tell. Pembrolizumab gives a better chance of finding and getting rid of any escapees. Still a risk of something returning but no one knows what’s round the corner and really no one can change what is there. Just got to do your best and roll with it. 

hope your appointment goes well x 

Thank you Mmum x

I shall have a read of your blog. Think I will try and do one. 

Hope your doing ok :) 

Your blog is so very helpful and encouraging … do you mind me asking do you know grade of cancer cells and if any sarcomatoid / rhabdoid cells present … thank you 

Hi AliAnn  Sorry but I've no idea what grade it is, or whether any of those other cells are present.  It's not been something I've come across or read about.  

Hi Janey, your situation sounds quite similar to mine but I am a little ahead of you, as I've had 2 Pembro treatments with my third due in about 4 weeks' time. I think I feel the same way about it as you seem to - just do as much as possible that might help avoid any recurrence. Side effects so far are manageable, mainly tiredness and tummy a bit upset at times but not too bad in the great scheme of things.I'll keep updating as I go along and we can compare notes!

Thankyou 

I am in the same boat as you now Janey36. Biopsy results tell me although the tumour was removed with clear margins, the clear cell RCC was aggressive (grade 3) and I am 6 (high risk)  on Leibovich scale, so waiting now for discussion and agreement to receive immunotherapy, and to have another CT scan too.

How are you getting on?