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.
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 !
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 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
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 )
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
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