Hiya, new to the group … just saying ‘hi’
I have stage 4 RCC… I had my L kidney removed in June … I was referred to Guys as the cancer was creeping to the renal vein…. I thought I had arthritis in my left knee, but following my kidney surgery I was referred to oncology who then told me I had lesions on my hip …. So my leg was x-rayed and MRI’d and I had a tumour in my left femur… was urgently referred to Royal Orthopedic Hospital in Stanmore and had a femeral distal replacement …. (I think that’s what is was called!!) I basically have a metal rod from the top of my femur down into my tibia and as my knee disintegrated during the surgery they replaced that as part of the deal …. They were amazing… booked me in for surgery a week after I saw them …
I started immunotherapy with an infusion and daily tablets every three weeks… all ok for first couple of months but month three… horrid side effects of vomiting, diarrhea and nausea … ended up in hospital for 7 days with my right kidney in distress …..
Reduced the tablets and same thing again … ended up back in hospital…
Now on tablets only but my Gallbladder has got a huge stone and has caused infection resulting in yet another stay in hospital with huge IV antibiotics, pain relief and other fluids to support ….
so…. Currently on no treatment (as that was stopped for last hospital admittance)… waiting on a list for gallbladder removal… was due to see my oncologist today, but due to sickness that was cancelled and I now have a phone consult next week ….
I have only had 3 weeks of treatment in the last 3 months and that scares me….. I was told by my oncologist that my life expectancy without treatment was 7 months and with treatment 3-4 years…… sorry not sure how effective 3 weeks in 3 months is….
sorry … didn’t mean for that all to come out …. Was just gonna say ‘Hi!!!’ lol
Sandra (on the south Kent coast)
Hello Sandra-on-the-south-Kent-coast,
Wow - that's some history!
I wouldn't believe these life expectancy figures. They are all based on average responses and they are all 5+ years out-of-date. Whilst, in the meantime, you have been able to have the latest treatment - the stats for which will be published in 2031+. Also stats can't take into account how well you respond to the treatment.
I would also add that immunotherapy is beneficial (if it works for you) for however long you take it. The optimal is about 2 years, but even if you only mange one cycle of treatment, you've still had some positives (we hope) from it. It seems like you've had 3 months of treatment so that's a good foundation. I get three months from this sentence:
all ok for first couple of months but month three
Do you mean you've only taken the infusion /tablets for 3 weeks ? It doesn't matter, it's the duration that matters. They work on the non-treatment weeks also.
I have only had 3 weeks of treatment
In fact, immunotherapy keeps on working even after you stop - at least for 2 years.
There's a lot of research going on with immunotherapy at the moment to define what is the ideal dose and duration. The oncos know they are over-treating people. My onco is involved in some research on it.
I got told 2 years without treatment and 5 years with. And that was in Nov 2021 so it's a big event for me in Nov this year. Then I came on here and learnt all about how they calculated life expectancy and never bothered asking again. Now, I read the room, instead and I know the signs to look for. ,
I have stage 4 RCC too. I've stopped immunotherapy now because I decided I had to stop before I got the side effect from h3ll 
I stopped in June 2024.
Finally, I have to commend you on your cheery attitude!
Welcome to the group and I hope you find lots of help and support here.
