Kidney cancer treatment

Hi - I'm sorry to read your story.  I would agree with you, there is a discussion to be had with your oncologist and they need to know your experience of your treatment.   There is a balance to be sought between the benefit of the drug against the potential side effects.  The decline you describe, this might be a side effect of the drug or the KC? 

You're right, chemo isn't usually a go-to treatment for RCC.  But within the immunotherapy umbrella there's a couple of different drug types.  There's the immune checkpoint inhibitors (eg nivolumab, ipilimumab, Pembrolizumab ) and then Tyrosine Kinase Inhibitors (TKI) a targeted therapy drug (eg tivozanib, Cabozantinib).  Fortivda contains the active drug tivozanib.  

You can ask your oncologist why they chose a particular drug.  Interestingly the drug your partner is on, is the one my onco has in mind for me next, once I've had the full benefit of ipi/nivo.  The rationale being that it's known to be good for people who have had immune related adverse event.   

Give your onco or support nurse a phone because if you're not sleeping, waiting for the scan and subsequent follow-up appt is too long to wait.  

Hello Mumm,

I'm having difficulty with replying to your posts - I posted a reply this morning but haven't seen it appear. Do all responses go through a moderator? Maybe that's why it hasn't appeared. If this is a duplicate post, please accept my apologies.

Basically, I said that I wanted to thank you once again for sharing your knowledge and experience. My wife Val is a few months behind you with her treatment of clear cell RCC. It has spread and she has gone through her complete initial  session of Ipi/Nivo and is now on a fortnightly dose of Nivo on its own - she will have her second infusion this afternoon. We were particularly interested in your saying about going on Fortivda "once I've had the full benefit of ipi/nivo" - what would this entail? Would it mean that the tumour had stopped growing, or that the nivo was no longer working? I mentioned that Val's oncologist initially thought that the ipi/nivo wasn't working, having seen her most recent CT scan, but then phoned the following day to say that a review had shown that it had started working. Big sigh of relief, but tinged with regret that she had been given the wrong information. Thanks also to Jerry for sharing this. 
Best wishes to all, Ron and Val.

Hi Ron & Val
Just this post appeared this morning. 
"once I've had the full benefit of ipi/nivo" = meaning it's stopped working, so the tumour has grown or new lesions appear on an existing organ which already is cancerous, or it's spread to a new organ.   

I saw your post the other week about the scan results.  It sounds like the consultant looked at the scan and made a decision,  instead of waiting for the report (assessment) from the specialist radiologist.    When the impact/improvement is subtle you can't detect it with the naked eye.  The radiologist goes through a lot of systematic measurements to ensure it's objective and consistent each time.   I grilled my oncologist about the process once I started.  He says to me all the time "I'm not a radiologist".  

Thank you for that. I am in a bad place right now and trying to be strong for my partner who thinks they know best. It’s a nightmare. 

I just replied to you but not sure if you got it. I am struggling to use this group as I am not great on line. 

Yes, all received.  Wishing you the best.