Avelumab and Axitinib combination treatment

Hi Mark and Chris654,

Thanks for the update Mark, that is good news on your scan result.

I have just had my first telephone consultation, which was also for CT scan results from my second scan since I started this treatment. My scan is also good, showing further reduction in tumours, and no new disease anywhere, which is great. So I have also just missed one Avelumab infusion at the Hospital, as they didn't want me going there this week. However in two weeks I go back to hospital for the treatment to resume, so we are pleased about that too.

Side effects continue but seem to always ebb and flow, and are all manageable.

Good luck, and all the best to you all.

Hi, I started immunotherapy on 30th March which is twice daily Axitinib and should be fortnightly Avalumab Intravenous but with the situation I will be having a monthly treatment, since starting I have had mild side effects, just fatigue and a bit of muscle ache, had a telephone consultation today and back in Monday for the Avalumab, hope all goes well for you let me know how things are going

Best wishes Steve 

That’s good news Rich. Sounds like we are getting the same advice, I had to miss the last treatment due to Covid but back again next week (at least it gets me out of the house).

Hi Steve, 

new members are always welcome. We all seem to be on some kind of reduced treatment so will be interesting to see how it pans out (monthly treatment would be good long term if it’s effective). At least it’s nice weather. 

Hi Just desperate for some advice. I seem to be either constipated or have diarrhoea & cannot seem to reach a happy medium. I have one very sore butt & have tablets from the nurse for both & am taking lots of salt baths.

Has anyone got any dietary advice. I am vegetarian but have learnt I cannot eat raw veg at the moment as that upsets my stomach. 

just getting a bit desperate as I’m so uncomfortable

Also any lotions or potions that might help my poor butt. Been using sudo cream but am still very uncomfortable.

Hi Reign

sorry to hear you are having difficulties. Sadly can’t help, only had occasional upset stomach but it passes after a day or two. The diarrhoea is a known symptom so hopefully it will pass. 
good luck and best wishes.

Hi Reign

Sorry to hear too.

I've found that following specific loperamide instructions doesn't work for me. If you get to that middle ground between constipated and loose even for one day - I found one tablet as soon as the next loose stool - which was never enough to stop - but took me to the next and then another one - and maybe having to do that once more - but not constant two then two etc. otherwise I'd become constipated - so I range between OK and loose more often than not.

Moist toilet tissue I find a godsend.

And for soreness sudocream is good and if you slather it on at night gives it a chance to work too.

Sounds like you're doing as much as you can. Your nurses might hvae some suggestions?

Hi Reign,

I don't know if will help but my experience with my medication  is that certain foods trigger the diarrhoea.   In my case the main culprits are raw onion, broccoli and unfortunately beer.

I am on an intermittent treatment which, although I am lucky to suffer few and only mild side effects, means that the response varies each time I resume treatment and the foods I react to change most times.  At the moment broccoli is killing my stomach.

Making a note of any foods that you are before a bout of diarrhoea might be useful.

All the best,

Gragon xx.

Hi can I ask what tablets you were given for constipation?

Many thanks