Avelumab and Axitinib combination treatment

Hi thanks Mark

I got amazing news yesterday - all my things have shrunk, having only been back on Pazopanib 3 months!

Glad u feel able to face your treatment now. Uncertainty n waiting for treatment to start are the pits, aren't they!

Sue

Hello, just popping in to let you know that I’ve started treatment. Went for my first intravenous Avelumab infusion this afternoon. Just downed my first Axitinib tablet a few minutes ago. Day 1 of the new era. 

All the very best to you all,

-Mark 

Hope it goes well Mark

Sue

Hi Mark, I wish you all the best on your course of treatment. I actually received my first scan results on Monday and all tumours have shrunk! The largest (4.5cm ish) has reduced by 10%, the next two significant ones (2.5cms ish) are now two small to measure, and the remaining growing nodules have gone. The scan was after only 6 Avelumab treatments. I am currently off the Axitinib tablets for 7 days as enzyme levels in my liver are causing a little concern, I'll find out what happens next a week on Monday. All the best, and remember to post any queries you have so we can all support you.

Hi all 

I don’t know how to write a message without pressing reply so sorry if I’m replying to you and it’s not relevant lol ! 
map mums scan results are in , lung mets shrunk (yay) kidney stayed same (over 14cm) new mets in liver and new in lymph node . However mums consultant wants to keep her on the treatment as she says even though there’s no shrinkage that there is a lot more dead tumor tissue so she’s confident that the treatment is working . So here we go again infusion tomorrow and let’s hope the next scan is the one we can get excited about . (Mum was diagnosed 13th September this is her first line of treatment it was not started until November so consultant wondered if all the new cancer could have grown between diagnosis and treatment starting as was approx 7 weeks wait) 

Happy February, everyone, pinch and a punch and all that. 

Hi Rich65, thanks, best wishes gratefully received. No questions for you at the moment though, except, always, to ask how you’re doing. Pretty well, it sounds like, and those are great interim results! 

Went for a talk & test appointment yesterday, ahead of my second Avelumab infusion on Monday. But in reality I didn’t have much to tell them and they didn’t have much to tell me. All’s fine so far. 

Not consciously, perhaps, but on an underlying level I think I’d been half-expecting to get ALL the likely side effects immediately, in Week One, as soon as the first infusion and the first tablet or two hit my system. I was wary, and steeled for that. Every little digestive gurgle or mild headache (most likely unconnected to the medication) and my brain would leap to “Uh-oh, here it comes. Make sure the anti nausea, anti diarrhoea, packs and the 24hour helpline number they sent me home with are within arm’s reach.” I cut down on coffee, and haven’t had spicy foods or alcohol, *just in case* - but nothing developed. 

I got to the Saturday when I felt distinctly buzzy, and then on the Sunday I realised that I was completely calm. All that underlying tension regarding having to start on drug treatment had lifted. Having assumed that everything would change, what’s startled me is actually how little has changed. (So far, anyway!) I feel a bit like those cult members who proclaim the end of the world and that they’ll be whisked off to heaven on a particular date, and then they wake up the next day still here and the world carrying on as normal. Ha! 

So, sure, some tiredness but nowhere near what I was expecting. Oh, and my voice went funny for a few days, but has returned to normal now. Pity, I quite enjoyed that. But we’ll see how things go after my second session. 

All the best, everyone, 

-Mark 

Hello 

How is everyone getting on?

Got my second (6 month) scan results today and everything is held (no new growth and previous shrinkage held) so all good news. 

Had treatment today but consultant has advised me to miss the next one out to avoid peak Covid19

Treatment has still had little side effect so far which is good.

has anyone else been advised to change anything?

regards

chris

Hi Chris, 

Thanks for sharing your positive results, you must be really pleased. 

My first scan since being on this treatment alos showed a reduction of all tumours, And I go for my second scan on Monday so I am hoping for similar results to you.

I have gone through various side effects, and at the moment have hand foot syndrome affecting my feet - it’s quite painful. For everyone’s information I was prescribed 10% urea cream which my partner has been applying for me, and from yesterday it’s been 30% urea cream that we bought from Amazon. Too early to see any results yet. 

So far I have not had any changes to my treatment but maybe I may be informed on Monday, which is also a consultant and treatment day for me. I’ll keep you all posted. 

All the best. 

Hi Chris654 and Rich65, 

Great to hear you’re doing well. 

Posted an update the other day, but if you didn’t see it: 

Went for my first CT since starting on Av/Ax, last Friday. Had the consultation part later over the phone, instead of face to face because of the Covid-19 situation, and instead of having to wait a couple of weeks for the results they’d got them ready for me soon after I got home. Good reduction, it appears, of the largest lung met, the others stable.

But: All my treatment has been paused until after my next 3-month scan. For my own safety, I would emphasise - because they don’t know how our immune system will react to a Coronavirus attack - and the scan showed that I’m fortunate to be in a position to view the break as a treatment holiday and NOT as a denial of necessary drugs. I just hope I can resume on this combination when the world returns to something like normality later in the year. 

By the way, haven’t had any significant side effects from the drugs. Some mouth sores recently, and having to learn to recognise the limits to my energy levels, but otherwise reasonably plain sailing. 

All the best, and fingers crossed for your progress, 

-Mark 

Hi Mark

Sorry I missed the original post.  Good news from your scan, hopefully Rich will get the same next week. 

At least the side effects should pass with the break but three months seems a long time.  Needs must I guess. 

Keep in touch.