Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Avelumab and Axitinib combination treatment

Rich65
Posted by

Hi, I am starting on the combination of Avelumab and Axitinib at The Christie in two weeks time. I would be very happy to hear feedback from anyone who was on this as a trial, (Javelin Renal 101 ?), or is about to start on this soon....Especially about side effects!

Rich x

forgottenworks
Posted by

Hi

I can’t contribute any first-hand experience as you’re ahead of me on this, but will certainly be interested in any replies you get. Last Friday I went for the results of my recent CT scan to be told that I have another tumour, this time in the psoas muscle in my back, to accompany the mets on my lungs. A further scan just before Christmas was suggested, with a view to (probably) starting drug treatment sometime in January. It was this Avelumab/Axitinib combination that was proposed. I was given several photocopied pages of info on each of the drugs, but you’ve probably got similar yourself. 

All the best, -Mark 

Rich65
Posted by

Hi Mark. 

Thanks very much for your reply. I’m quite surprised that you are the only person that has replied, but obviously it is a new treatment. I read your profile and we have had similar backgrounds, including both being gardeners.  I now know that I start treatment on the 21st of October, and I plan to keep a diary of everything from then on. I would be happy to share it as I think my experience could maybe help others in some way. I haven’t had a patient information leaflet yet on the this treatment as The Christie Hospital are still writing one, but I have have read the information about each of the drugs when they are used on their own. 

All the very best. Rich. 

Rich x

Planetmum
Posted by

Hello rich 

its the first time I’m writing here so I’m not sure how the thread works or if you will be notified . 
my mum is going to start this treatment too , she had the option to start it at the Christie or to start it at another hospital that can get it sooner . 
she met with Tom from the Christie on Monday and he informed her they have not gone through the process of securing this medication yet and if she wants to start the treatment it will be around 6 weeks . Our local hospital will have it available in around 2 weeks so she is going to start it with them and then possible transfer her care to the Christie at a later date if she wants . 
ive reached out on the Facebook kidney cancer page to try and find people who were on the Javelin trail and I’ve read and researched too it sounds promising. 
I will defiantly be keeping an eye on the thread for developments with you and hopefully my mum will join the site soon and you guys can chat 

forgottenworks
Posted by

Hi again

Well, looks like you’re about to head off up the track on your own with this Axitinib / Avelumab combination treatment, thwacking nettles as you go. Assuming I’m following you in a few months time, I’ll be keen to hear about your experiences so keeping a diary is a great idea. I’ll do that too, myself. Wish I had done so right from the beginning of all this, to be honest. You think you’ll always remember - but you don’t.

Because I had two separate cancers, it meant that I wasn’t eligible for any drug trial. But once I get over my initial gloom at having to start drug treatment at all, I’ll feel quite positive about starting on this combination treatment, it being so new. I’m at Addenbrookes, so I’m sure my stats will contribute to the research in some small way, whichever way it goes for me personally. 

That’s a lot of surgery you’ve been through. I’ll remind myself of that should I be inclined to indulge in a bit of self pity. These things just keep on coming, don’t they? 

All the best, keep in touch. -Mark 

Maybug
Posted by

Good thinking about the diary Rich. It’ll help you and may help others in the future. I’m sure you and Mark won’t be the only members of this group to be offered that drug combination at some point.