Avelumab and Axitinib combination treatment

Hi 

Thank you for asking. It was ok. The nurses were lovely & the treatment was fine.  I was able to listen to the podcasts I had downloaded which made the time go quickly. I felt very dopey afterwards - although some may say no change there!

I've started the tablets & my symptoms after two days are mild. I have a metallic taste in my mouth & the red palms, I feel a bit sick but nothing I cannot cope with. Blood pressure is a little high but that could be life & Christmas related.

I'm finding this thread very useful as I cannot find a lot of practical information anywhere else. I've taken the advice from the previous posts & am trying to drink plenty & moisturise a lot. I've found I feel better if I go for a walk.

It's still early days for me so I realise things may change. 

Hi

I got my first 3month scan results today. Tumour has responded positively to the treatment and has shrunk from 2.5cm to 1.5 which was very good news.  The treatment has raised my thyroid which will need medication in month or so but otherwise all good. Cycle 8 completed and might be moving to 4 weekly treatment once thyroid sorted.

hope everyone has a Happy Christmas 

Hi Chris,

That's great news! You must be really pleased.

You mention about a four weekly treatment, would that be a double dose every four weeks or would you be going onto a reduced dose? And do you know if your Axitinib dose will change at all?

I'm expecting my three month scan around the end of January...

All the best.

Hi I had my second cycle yesterday. I didn’t feel so tired this time which was good. 

My tongue has been sore so I was given a mouth wash - which you’re right is strong & the advice on children’s toothpaste has really helped. I’ve had to cut out hot & spicy food but can still eat most things. 

I’ve had terrible wind which is painful but the old peppermint tea seems to be helping. 

Blood pressure has been high but the nurse didn’t seem too worried. 

I’ve been trying to go for a walk everyday even if I don’t feel like it & even played badminton (badly) this week. 

I just hope it’s working & that the symptoms remain manageable. 

As always your posts are helpful - thank you for updating. 

Hi Rich

The consultant was a bit vague about the switch to four weekly treatment so don’t have any details yet. 

Will keep you posted.

happy new year to everyone 

chris

Hi Everyone,

Just a note to say I got the results of my pre-Christmas CT scan this afternoon. Pretty much what I was expecting and preparing myself for, growth in the lung mets and more so the one in my back so I’ll be joining you on the Avelumab/Axitinib combo before the end of the month. 

Happy New Year to you all,

- Mark 

A happy n healthy New year to you Mark

Sorry you'll have to start on the combo soon 

Sue

Hi Reign

I use children's toothpaste which is fruit flavoured. It's from Sainsbury's own Oracare range. I'm not on the same meds,as you, but Pazopanib, which affects my sense of taste.

Hi

Sorry your scan results weren’t the best. Wishing you much luck with your future treatment.  

Hi and buttercup01, thank you. 

Yep, got CT results last Friday, then the next day we took our son back to university for his second term; it’s gloomy January, cold & drizzly, and so I did then have a couple of days when I felt a bit wobbly of lip and damp of eye (when on my own, walking the dog) as I considered my medium-term prospects and impending short-term uncertainty. But I’ve regained my balance now, back on an even keel, and while not looking forward to starting drug treatment, exactly, I do feel ready to get on with it  

All the best to you in your situations too 

- Mark