Chromophobe RCC Diagnosis / Immunotherapathy Treatment Lenvatinib & Pembrolizumab

Hi there.   Well done for taking the first monumental step of posting.  You'll find us to be a friendly bunch and there's always someone who has encountered similar experiences or treatment able to share insights.  Good to hear the side effects are manageable at the moment.  I'm on nivolumab, a different immunotherapy drug, but I think they all have a rash as a side effect.  I got some itching at the start but nothing now.   Only advice I can think of is that it definitely gets easier as you progress and with time you come to terms with everything.  Immunotherapy has been a great "find" for RCC.  

Hi! Welcome! 

i have one suggestion that may help your aches and pains....Epsom salts in your bath. Hope you have a bath, not a shower! This old-fashioned remedy has helped me a lot recently. You can buy them at pharmacies, or on the internet. This might also soften your skin too!

Hi Arlene,

I’m on Lenvatinib as part of a trial in conjunction with Belzutifan. It’s very difficult to compare side effect especially if you can’t pin down the different side effects for each drug. I have been getting a lot of joint pain mainly in my fingers, elbows and ankles which I’m told is down to the Lenvatinib. I’ve now been on these drugs for 4 months at the highest dose and I’m about to have the dose reduced from 20mg to 14mg as this is a known side effect. I’d hope your oncologist would have given you some printouts listing the side effects of both drugs, if not the MacMillan site has details you can download that are very helpful.

I must say having had 3 different types of treatment over that last 2 years, I have tolerated this combination the best.

I hope this helps and good luck with your scans