Hi all been a while since i posted here, I had a radical left nephrectomy with removal of the lymph nodes and left renal vein back in July 2023, found out it was advanced stage 3 RCC (I was close to Stage 4 according to my surgeon who did my surgery the day before he went on holiday), with intermediate risk, my oncologist was rather twitchy about it and offered Pembrolizumab pretty much immediately, with the requisite scans etc. Last dose of 9 treatments was in Sept 2024, this Sept (2025) they decided that my scans were going to 6 monthly because my kidney wasn't happy with the dye they were using and they had done more scans than usual....
Towards the end of that treatment I developed side effects (I was expecting something...) and ended up with my Thyroid going sideways, I have joint and muscle pain, dry mouth , nausea, chronic fatigue, insomnia, skin issues, they are manageable , i have codeine for the pain since im forbidden to use anti inflammatory meds as they're kidney killers, cream for the skin and sprays for the dry mouth and thyroid meds, the Drs decided not to give me steroids either because I had issues with those.
TBH the worst of all is the fatigue and insomnia, this isnt helped by the thyroid going off and i also have PTSD on top, I also found that I have alot of nerve pain as I had a full open surgery, I have what ive been told is a 'shark bite scar' which goes across my abdomen, I have pain around the surgery site, and around the scar as well. Trying to combat the fatigue isnt going well as im knackered most days,
I will say that I wouldnt change a thing regarding the immunotherapy, given my odds without it since chemo has such a crappy survival rate for RCC, it was an obvious choice and its a trade off of course but I have to hope things improve some day, and I consider myself very lucky. Sadly there isnt much of a support system in my home town, its a bit of a cancer support desert so to speak, the only place offering support is a hospice and im bloody well not at that stage yet!
Also with the PTSD i cant leave the house now so finding support has been doubly difficult, so I have come back online in the hopes of re connecting with people here to at least be able to talk to someone that understands
Hiya Daisy, i too have thyroid, heart in fact lots of silly bits going hay wire.
I have wonderful support by phone or appointments etc and of course here. About all my medical stuff, so dont worry your oncology team has all the info
I have started doing my BP and blood sugars 3 times daily. Only nouget it's found is my distolic blood gets very high. Adjustments to heart meds has helped.
I also get copies of my bloods off oncologists secretary to make sure I am also keeping an eye on my body too.
Me very fatigued too....not knowing my own body and brain anymore is stressful at times. But I carry on, try to smile...would live some ' get up and go ' 
Anyway love sent
