Hi. I am being offered this as 2nd line after "failure" of Axitinib+Pembrolizumab, sadly, after 9 months. Wondered if anyone else can relate to this. Best wishes to all...
Hi Chillamum, my DH is on Lenvatinib and Everolimus, this is his third line treatment as he started with Sunitinib, then had immunotherapy, and now the lenvatinib and everolimus. He’s been taking it for 12 days now, and so far he is ok. Feet are starting to get a bit sensitive, but we’ve been down that route before with the Sunitinib so will do the same things to combat and hope it works! He also has mouth sensitivity, and he gets some stomach discomfort. He’s on tramadol for a spine tumour so that helps dampen everything down to manageable. You are not alone x
Hi Vulpes. Sorry to hear you are both having to go through this too and I wish you the very best. It is a double blow when a form of treatment doesn't work. Horrendous because it isn't working but then also this huge feeling (for me anyway) of failure - that it is somehow my fault. The 12 days you mention is especially helpful as I feel I could risk a trip (450 miles) down south to see friends and family before I struggle to walk and eat properly. I had palmar/plantar and Mucositis with Axitinib (in conjunction with immunotherapy) so am expecting to get it with this. Did your husband find anything particularly useful for these side effects? X
Hi Chillamum, will get DH to reel off his list of remedies when he is awake, and then post them here. We are in NZ so it’s 9:35pm here. He’s asleep early most nights. Since the spine tumour he has stoped work and that has made the biggest difference of all to managing side effects. His body is under much less pressure and stress.
Oh life changes so much doesn't it. It is wonderful that you are such a support. NZ! We're west coast of Scotland. We are lucky that there are treatments here not available in England. I hope you have good cancer support over there too. Take care x
Hi Vulpes. Started the Len+Eve yesterday and thought I was a goner last night. Felt unwell, checked my BP & it was sky high which, of course, makes it worse. Thought I had chest tightness so should really have contacted the 24hr helpline but kept hanging on... Still here though have taken 2nd dose with a big dose of anxiety! Did your husband get high blood pressure? Hope you are both doing well x
Hi Chillamum, yes indeed one of the side effects that needs managing is raised blood pressure, DH was issued a blood pressure monitor with the medication for this reason and has to check his every day. He is also on medication to manage the raised blood pressure. DH actually had a major STEMI heart attack after taking Sunitinib for 9 months, he had underlying genetic heart disease we didn’t know about so the high blood pressure want managed sufficiently. Honestly don’t mess around with chest pain etc. make sure they sort you out!
Hi Vulpes. I am sorry to hear your poor husband has been through heart trouble too. I took part in a trial for a cardiologist studying effects of Axitinib so I do have a BP monitor & check that daily. Fingers crossed for us all. Take care x
I see from your post that you were offered the combination of Lenvatinib and Everolimus four months ago can you tell me how you are doing on this as I have been offered this I did put a blog on to see if anyone else is on it
Hi Sandra. So sorry to hear of your rocky journey. Yes I am on lenvatinib + everolimus. My last scan was inconclusive as far as lung tumours went. Kidney just the same but lymph tumours slightly smaller. I am getting an early scan on 23rd Feb to double check the lungs so should know on 3rd March and can decide from there. The only side effect really is nausea but we don't know which drug is the culprit; could be either or both. I hate the nausea tbh so am trying different nausea pills. I have stopped the drugs twice; once for Christmas and again for a special trip/meal as my taste was affected too but its okay so far after restarting 10 days ago. I'll post my results when I have them. If you are not confident with the treatment you are getting please do ask for another opinion. I wish you the very best whichever you go for x
