Avelumab and Axitinib combination treatment

Hi Rich65, 

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 

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. 

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 

Hi again Rich65, 

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 

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. 

Hi Mark, Thank you for your message, And yes I am following your suggestion and I am keeping a diary. I started the treatment at The Christie on Monday, and it all went smoothly. The first thing was that I did not have an immediate reaction to the Avelumab infusion. So I now go every other Monday to continue this.

I was given the Axitinib tablets to take home with me and decided that taking them at 9am and 9pm would work well for me, so I took the first one Monday evening. By Monday evening I felt exhausted but we had had a long day as it's a two hour journey each way for us.       On Tuesday I felt okay, just a little tired still. On Wednesday I felt fine when I got up but by the afternoon I felt like I was recovering from a bad cold, with a bit of a headache. Thursday morning I felt fine but started feeling very tired from lunchtime onwards. I had a headache that Paracetamol won't shift (I'm going to phone up and ask advice) and a cough now too. I have had a sleepless night and still have headache and cough this morning. I am assuming that these may be temporary side effects, and that it's just my body adjusting to the medicines.  

I hope things are okay for you at the moment, and I will find a way of sharing my diary at some point.

With best wishes, Rich.

Hi Planetmum

Thanks for your reply, I hope all goes well for your Mum. I assume that she will be receiving the treatment on the Early Access to Medicines Scheme (EAMS) like myself. We did find out that a decision won't be taken until the Spring on whether the NHS is able to purchase it. Rich.

Hi Maybug

Thanks for your message, yes I am keeping a diary. As Mark rightly pointed out it's too easy to forget things! All the best, Rich.

Amazing, though,  how they can find the money for a fancy train (HS2)? 

Hi Rich65 !

How do you feel after your first full week on this treatment? 
Thanks for that snapshot of your first few days. I hope that those early cold-like symptoms and headaches have subsided and that you’re finding it bearable. How are your energy/fatigue levels?

Selfishly, I suppose I’ll be trying to gauge whether I’m still likely to be able to work after I start on these drugs myself. I’m self-employed, and even though it will be at the quiet time of year for a gardener, I do still try to keep things ticking over before the surge of work in the Spring. So I’m a swarm of question marks at the moment.

Otherwise, yes, things are fine, thanks. Had another hospital appointment today, an hour’s drive each way, to be officially signed off from the bladder cancer side of things. The consultant said it’s very unlikely to cause me any further trouble; and anyway the kidney thing is quite enough to be dealing with :-) 

All the best to you, -Mark