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Hi everyone, my husband has been diagnosed with clear cell renal cell carcinoma in both kidney 110mm in one and 11 cm in the other with cancer nodules in his lungs, the doctor would ideally like to start him on AVELUMAB and AXITINIB one a tablet the other infusion, . Is there anyone on the same medication here? We have to see her in a few days but I was wondering if anyone is taking this medication do you take both medications constantly or do ypu have them for a few weeks then have a rest?

thank you


  • Hi - I am half familiar with this combination immunotherapy as it was on the table when I was choosing my treatment.  Yes, it's both meds simultaneously.  Axitinib tablet - daily at home.  Avelumab infusion - every 2 or 4 weeks at a day unit in a local hospital.  I don't believe there's a rest period in the cycle.

  • Hi thanks so much for your reply, when you say a cycle I suppose if he responding well to it then it will be a long time? Well hopefully we will find out more next week, thanks so much for the info, take care, Linzi 

  • Hi,

    I was on the exact same regime.  Axitinib twice daily and Avelumab on a four weekly cycle.  My treatment continued simultaneously for nearly three years and 33 cycles of Avelumab.  Treatment was only interrupted a couple of times when I had Covid and surgery.  From my experience they do tell you you can take breaks from the Axitinib now and again if the side effects become an issue and it does take time to get the dosage just right so it's tolerable, but the consultant will advise you.  

    If it helps, this worked for me.  I had stage 4  metastatic, primary a large tumour on my left kidney and secondary in my bones and several other places. My tumour shrunk enough that they were able to remove the kidney by keyhole surgery 15 months ago.  Same treatment continued until last December and as several scans didn't show up anything noticeable it was decided to stop it all together.  Now on a watching brief with  regular blood tests and scans.

    Anyway, best of luck to you both and hope your husband's treatment goes well. It will take time to adjust but stick with it and persevere. 

  • Hi

    thank you very much for your reply, it gives us both a good idea of the way it will go, hope everything stays well for you all the best 

  • Many thanks.  There will be ups and downs but stay positive.

  • Interesting - so how much did the big one shrink to when they took it out ?  Have all your tumours gone?

  • Treatment started March 21.  Decision to remove kidney was November 22.   Removed March 23.  Last couple scans showed no signs and have a meeting with the oncologist in a couple of weeks to get the results of the last scan taken last week. 

  • Good luck ...How big was tumour on kidney when they removed it ? Husband has same issues but his was very big when he started treatment and it has gone down by one third so far...

  • Thanks.  It was around 8-9cm and down to around 3-4cm when removed.  I have read on here of much larger ones being removed, but mine was done by keyhole so I would have thought it needed to be smaller sized for keyhole. I have to say the surgery was most unexpected as it came out of the blue during one of the face to face with the consultant. 

  • Thanks thats very interesting ..hope you go from strength to strength !