My husband has been on 5mg Axitinib 2 daily with fortnightly Avelumab infusions since April 2021. Things were going great until around Christmas time when the side effects of the treatment started to get a bit overwhelming, particularly the diarrhoea which was pretty much every time he ate.. This culminated in an ambulance being called and a 2 day stay in hospital whilst they tried to sort him out, at the end of March.
once off the Axitinib the side effects cleared up pretty much instantly, the soreness gone within a couple of days and tummy back to normal within a week. It was lovely to see him back to his normal self and easy to forget that he actually has a kidney tumour
since then, he has been put on a reduced dose of the Axitinib for the last four weeks which seems to be suiting him much better, although he say that he thinks he can feel his sore mouth and nose gradually coming back.
He has had great results on this treatment so far but I am concerned that being on the lower dose, although less severe in terms of the side effects, is not acting so well on reducing the tumour. He has a face to face appointment with the consultant on June 8th ( first face to face since his diagnosis) and I’m so worried there’s going to be bad news.
Hate this dark cloud that is constantly hanging over us.
Has anyone else reduced their Axitinib strength and how did you get on?
xx
Hi Gigi1973
I can't help with the experience you're looking for but I noticed that your post hadn't had any replies yet. By responding to you it will 'bump' it back to the top of the page where hopefully it'll be more easily seen.
While you're waiting for replies you could use the search bar at the top of the page and type in something like 'axitinib reduction' to look for previous posts which mention it.
x
Hi Gigi1973, just saying hello , I am on Axitanib but the other way around having just had my dose increased from 5mg to 7mg and just started with the side effects. But anyway I am here for you to chat through anything.
Take care,
squdgyhugs (Trish)
Hi , thanks for replying, it’s good to here from others going through a similar thing. How are you doing on the Axitinib?
In our experience it’s had a brilliant effect on reducing the tumour but the side effects are a challenge.
Hope you are doing well on it.
xxxxx
Hi gigi1973,
i had a radical nefrectomy for kidney cancer they thought they had it all but 2 years later after fear scans my last one in October last year showed two mastoids one in my lung and in my hip , I started my treatment in a December and my scan in March showed that on 5mg Axitinib BD.the lung mastoid had totally disappeared and my hip was healing.
My consultant increased Axinitib dosage up to 7mg Bi daily then the side effects started to kick in, it sounds like it differs with people but mine seemed to pop up for a few day then pop up somewhere else. I have had a sore mouth and sore feet a rash that was like a mozzy you swot it with cream and it pops up somewhere else. I have had some joint pain but that seems to have abated now. The sore feet have been the worst and I have been zapping with Udderly smooth cream. My thinking is that it’s working or doing something and .I keep everything crossed that it will continue, my next CT is inJune.
Let me know how things go, I think some have had a rest from it then gone back on. See which road you go down and let’s hope it gets a bit smoother journey.
Take care and hope you have s lovely weekend
Squidgy hug (aka Trish)
Hello Trish. I hope you're doing ok. ,Had a kidney biopsy on Monday 6th. So waiting now for the results and a treatment plan. I believe I've accepted your friend request but not sure if I did it right. Please let me know. Best Wishes. Erchie
I have just come across your message again, how are things going now ? X
Not a problem , I will have a look and in any case we are both on the same platform xx
Hi, I was started on 5mg axitinib but 9 months later reduced to 4mg as I was struggling with the harsh side effects too! I’ve been better on this strength and have had a shrinkage of my tumour whilst being on lower dose, so I’m hoping your husband does too!!
My husband had to have his Axitinib reduced from 5mgs to 3 mgs about 2 months ago. We were told that it is fairly common for this to happen. When I asked with concern about the effects on the tumour I was given an example of another patient who had to go down to 2.5 mgs but was still having a good effect. I am keeping this example as my benchmark going forward.
I hope that this helps you.
Ann
Thank you so much for your response. The consultant has decided to keep him on the 3mg as he is coping much better with the side effects now. CT scan booked in for July so we will see then if it has continued to shrink .
Pleased to hear it is continuing to be effective for you, this is really positive. Xx
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