Everolimus Side Effects

Hi Garys1 I am sorry I do not have any experience of this, my cancer is a different type to your, but I noticed your post had not been answered yet. I hope you don't mind me popping along here, but I thought this information leaflet on everolimus might be of some benefit for you. 

Wishing you all the best 

Hi GaryS1. Sorry to hear you have kidney cancer too. I am looking at Everolimus + Lenvatinib after Pembrolizumab + Axitinib treatment is not working now. How are you getting on? I am dreading the side effects having had to reduce the Axitinib dose because of Mucositis & hand/foot before. Hope the drug is working for you. Best wishes

Hi Chillamum. I only managed four rounds on the medical trial with Everolimus. The routine CT scan showed slight increase on the tumour on my adrenal gland and also on the iliac crown. I had also started to get foot hand syndrome so the trial was stopped. Long story short feet were really bad and ended up getting cellulitis in my right foot and leg and had to have three weeks of antibiotics. Because of this I was unable to start on Cabozantinib until I had a week free of antibiotics. I started this Saturday so cannot comment so far on side effects.

With regards to the foot hand syndrome of all the moisturisers, creams etc,  the only thing that worked for me was Morrisons cracked heel balm. Wish I had found this sooner, I tried the udder cream but this didn't really help. I presume the Morrisons one worked as it contained 25% urea compared to 15% in the udder cream.

Hopefully the Evorlimus will suit you better, we all react differently to chemo. I really thought I was doing OK on it, and the hand foot syndrome didn't really present itself until around 4 months of taking Evorlimus. It has taken until now to have cleared. My hands are fine and my feet are just covered in patches of thick dry skin, which I can deal with, as before with the soles and heels of my feet cracking it felt like I was walking on razor blades. Try and find a nice pair of slightly over sized slippers for walking around in,that can be washed in a machine.

Wishing you all the best and hope whatever regime to start on works well.

Hi Gary. Sorry to hear about the hand/foot - had that with Axitinib and now go to the podiatrist often to have the hard skin removed. Excellent tip about the Morrisons cream - I'll try that as I'm sure I'll have the hand/foot as a side effect. I have been using Flexitol Callous cream which is 18% Urea but the best thing for me is to keep on top of the hard skin. I wear, perversely, stretchy sports socks as slouchy footwear wasn't helping me. I'm best wearing well-fitting trainers with orthopaedic insoles so it's all the opposite of what is recommended! We certainly all do react differently to all this horrible stufff we have to go through.

Was the Everolimus your first line treatment? I do hope the Cabozantinib works well for you and the hand/foot doesn't reoccur. Wishing you the very best x