Metastatic Papillary RCC

Very.  Interesting.  Post.  

My understanding is the treatment you are offered is limited by drug licence.  There's more trials for the more commonly occurring cancers therefore more variable treatment options available.   

Compare kidney cancer with breast cancer for example.  BC is one of the more common cancers, there are loads more treatment options, and adjuvant options common place as well.  As a kidney cancer community adjuvant treatment is still in trial stage for us.   

My belief is it's all down to the numbers with your cancer type.  Larger population for a trial, better statistical results (you can't prove anything with small sample size), errrr . . . . . . .  and the dynamics of capitalism unfortunately.  

Stats from the Cancer Research UK web:

• clear cell - around 80 out of 100 renal cell cancers (75%)
• papillary - around 15 in 100 renal cell cancers (15%)
• chromophobe renal cell cancer - around 5 in 100 renal cell cancers (5%)

Quite and it’s a principle I’ve encountered in targeted inhibitors. That’s why I was particularly wondering if there are any more among us than me that have papillary RCC but have been offered combined immunotherapy. 
As I’ve already posted previously, the years of severe side affects suffered with targeted inhibitors having battered my body to the extent that I no longer have any quality of life has led me to the drastic decision to stop treatment. However knowing how well I tolerated Nivolumab I maybe happy to try combined immunotherapy if it was available to me. 
I have an appointment with my Consultant on Friday and would have liked to have some anecdotal data to hit him with in fact anyone has any. 
Thanks for your feedback and as ever your interest.  I’m still hoping for good news from the trial that are currently part of. I hope it’s going well. 

Hello Rojan,

My husband was diagnosed last July with Pappillary RCC, which unfortunately had spread to the lungs. lymph nodes and adrenal glands. The initial treatment he received was Nivolumab and Ipilimumab together for four doses given at 3 weekly intervals. They then stopped the Ipilimumab and he continued to receive the Nivolumab at three weekly intervals. This was stopped after a ct scan showed that although it was working on most of the growths, the ones on his adrenal glands had doubled in size.

He was then started on 60mg of Cabozantinib, this he had for about 6 weeks before the side effects became to much for him, so he has been on 40mg for the last 3 months but last week we have had to stop it for a break, he is constantly suffering from the severe side effects and is not well at all. He has had every single side effect going on all three treatments, he was managing them quite well while on just Nivolumab before it was stopped.

He is due another scan tomorrow, with the results in next week, fingers crossed for better news.

We were told before he started any treatment that the Ipilimumab could only be given  for 4 doses on the first treatment cycle, but I am sorry I can't remember why this was.

Hope you find something that works better for you and fingers crossed no side effects.