Good morning everyone, I’m here to find out if anyone has been on Lenvatinib and Everolimus and can tell me if they had any side effects I should look out for. I know we are all different and experience different side effects but I wanted to see if anyone has been on these 2 drugs. I was on Cabozantinib and Nivolumab however my doctor has said my cancer is worse and we need to change to Lenvatinib and Everolimus. This will be my 2nd line of treatment.
I have also read on Kidney Cancer UK that in England the NHS only subscribes 3 lines of treatment, after which they say there’s nothing more we can do. Is this true? Just 3 lines of treatment? Do they just not keep going until they find a treatment that works? I know these drugs are very expensive and the NHS has cost to look after, but just 3 lines!!!!!.
Please if anyone can help with the above please let me know. Thank you. XX
Hi Russell1975
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Hi
I haven't been on lenvatinib and Everolimus. I'm an ipi/nivo girl. Still immunotherapy though, same as yours. You raise some interesting points!
I'm in Scotland, but I believe the approach is broadly the same in UK. I remember being equally concerned about the lines of treatment. I had a conversation with my onco about this. My understanding is that lines of treatment advance only with a new growth to your cancer, or new sites impacted. For example, I was on ipi/nivo. If the cancer stayed the same, but it was clear the treatment was having no effect, then I could change to cabo perhaps. But this wouldn't be stage 2 treatment because there's no material change with the cancer.
I think the 3 lines of treatment is correct, UK wide. But the thresholds between those lines are difficult to understand. I remember watching a video on Kidney cancer UK about a young lady in her 20s and she went through loads of different drugs to try and manage the bu55er. Something would work for x months, then the cancer came back, try another drug etc. Loop.
From what you say, I'm not sure whether you are on 2nd line. Did your team advise that? I remember asking my onco "if I change to immunotherapy blah because it's started growing again, is that 2nd line?". He said "no".
Hi Mmum, yes my team had a MDT meeting and then the next day rang me with the outcome. They told me the cancer has grown and the reaction to the current treatment was that it wasn’t working anymore. They then advised me to stop taking current treatment now, and new treatment will be ready in a week when I go in to see them. I have since seen my MacMillan nurse who said she’s never really heard of lines of treatment and she’s been doing the job a long time. I will ask the question when I go in on Wednesday 29th.
hopefully they will be able to set me straight. I will let you know the outcome. Thanks for the reply, take care speak soon. X
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