Hi!
My partner has stage 4 papillary kidney cancer. Diagnosed in 2020, had partial nephrectomy. Ok for a year then found it had spread to nearby lymph nodes and lungs. He was on Cabozantinib for 8 months, then Nivolumab immunotherapy for 5 months, but all has been unsuccessful so far.
We both caught Covid in September, and he ended up being hospitalised with a fever and infection. He’s lost about a stone in weight in that time and has really gone downhill.
Today we are starting a new battle, our third line of treatment which is Everolimus and Lenvatinib combination.
Wondering if anyone else is on this, and any top tips for managing it? How long before there’s any signs it may be doing something? etc
Best wishes to all going through this horrible time.
Hi Eskay,
I am on this treatment have been for six months now, my last three monthly scan showed it was shrinking, I was on Nivolumab May 2020 than Cabozantinib October 2020 than when that stopped working put on Lenvatinib and Everolimus commenced on 12th April 2022, it is a targeted treatment for my kidney and liver cancer, it seems the Nivolumab shrink my lung cancer I have another scan 15th November so I will find out than if still working fingers crossed, I hope your partner does not have to many side affects and picks up now they are on this new treatment, there does not seem to be too many on this medication I have only find one other person, so if you have any questions please contact me best regards Sandy
Hi Sandy,
Thank you so much for your reply. Great to know we’re not alone out here!
I’m guessing you have clear cell? Great that you’ve had such a good response so far. We’ve had a very rocky road and are really hoping for a response this time, or at least that he’ll start to feel better than he does now (and soon!). Are you getting many side effects?
Hope your scan goes well. Will keep in touch so we can compare notes and see how you’re doing.
Thanks again.
Eskay
Hi Eskay,
I have Metastatic renal cancer the only side affects I have are feeling tired, very dry mouth and I have lost my tastebuds, I also lost my taste with the Cabozantinib I have also lost my eyebrows and my hair is a lot thinner but while I am here it is not to bad, I hope your partner gets on well with the new treatment, I had cancer in both my kidneys found in 2019, I had my left kidney removed and my spleen as it was stuck to my kidney, if you clink onto my history you will be able to see my journey, sorry it is a bit long, but I know we all have to stay positive and keep talking and supporting each other there seems to be so many of us on this community and I do believe they are a great bunch and we are all willing to help and advise each other. I am sending hugs and best wishes to you and your partner Sandy xx
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