Adjuvant pembrolizumab

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Hi  I'm new here . Have just started immunotherapy  2 weeks ago and wondering   what experiences  others have on adjuvant pembrolizumab.   I've had my left kidney removed in Sept as I was diagnosed  with papillary  renal  cell  carcinoma  with sarcomatoid.  And apparently  there's a high risk of it returning  so have been put on this treatment.  

  • It's encouraging to hear you are on adjuvant pembro ThumbsupThumbsup  Kidney cancer is far behind other cancers with adjuvant treatments.  There's not so many members here with papillary rcc.  Hope you get some good replies.  Best wishes Heart

  • Hi Artful

    Due to go on this in the next 2 weeks and will keep tabs on this conversation!

    All the best, 

  • Thankyou .for your best wihes Apparently  its one of the rarer cancers and its quite  hard to find information  about it .  Can't  really believe  all this is happening   it was only picked up on a ultrasound  on  my liver in June  which they found  multiple  cysts  thank god they then scanned my kidneys !

  • All the best to you also

  • Hello Artful. Welcome to our group. 
    Can I start with an anti technology rant. This is my second attempt at replying to you.  I was interrupted with a WhatsApp message just as I was coming to the end of very long response, I was almost ready to send. WhatsApp message dealt with, I come back to your reply and it had all disappeared   Triumph Fuming 
    Rant over.

    It’s particularly nice to make your acquaintance as a fellow Papillary RCC sufferer. As Mmum has pointed out there are not many of us in this group. 
    Firstly, how are? Your surgery is still quite recent. I hope you are recovering well. And now you about to start immunotherapy, it must all be quite overwhelming for you  

    Things have changed since I had my nephrectomy 15 years ago. Methods of treatment and drug availability has been developed. Sadly not as extensive as for our CC RCC cousins, Development is always going to be targeted at the majority group first but we are catching up  Fingers crossed

    That all said  immunotherapy just simply wasn’t available for me post op so until 2017 i was treated with varying degrees with daily targeted drugs. If you read my profile you’ll get the gist  But in 2017 Nivolumab became available as immunotherapy for PRCC. I had fortnightly infusions from May 2017 until January 2018. No treatment's comes side effectfree and we all experience differently but for me immunotherapy was a walk in the park compared to drugs treatment. A little change in hair colour and a dry mouth was all I remember suffering. 

    Pembro is a comparatively new development so I have no first hand experience but the medical tech blurb seems encouraging when compared with Nivolumab. 

    I hope it all goes well for you and keep up posted. Any help we can given please be sure to ask  

    Rojan  (PRCC united Slight smile)

  • Thankyou for your reply  yes it does seem that there's not a lot of info on papillary  renal cancer and I see from your  profile  your female  too ( sorry forgot to say in my profile  and I'm 58 ) that makes us an even rarier breed . A lot more males seem to suffer from kidney cancer.   Will keep you posted on pembrolizumab  and how it affects me although sohard to know if it's that or possible op  symptoms  at moment  x