Medication

Hi Chester fc

I was passing and noticed that you hadn't had any replies to your post yet.

Having done a search of the group I've found Davethedog is the most recent person to have mentioned this combination of drugs in his post so have 'tagged' him into my reply to you. Hopefully he'll be able to pop on and tell you about his experiences.

All the best

x

Thank you Chester. I am learning more each day on how this wonderful site works. Again many thanks  you're a star. Adrian

Hi Chester fc

I was put on both as a combination therapy, the Avelumab which is the immunotherapy is given by an infusion which for me took about an hour, it used to make me feel a little washed out for a couple of days but it wasn’t too bad. The axitinb was a simple daily pill, they started me on 5mg which was OK but when they increased the does to 7mg it caused a few problems, so I went back on the 5mg.. There is a big list of side effects but for me l got sore fingers and a sore tongue but that was about it. They do like to see your BP (the lower figure) around 90 or less, so you do need to monitor your BP.

I had 10 cycles of this treatment. 

if you have any specific questions let me know and I’ll happily get back to you with happened to me/my experience.

Good luck!

Thanks really appreciate it its for lymph nodes in my chest bit worried of side effects did it work for you 

I wouldn’t worry too much about side effects as (in my case) they start you on a low dose and build it up if you are tolerating it OK. It’s a targeted therapy so it’s nothing like what we all expect “chemo” to be like.

My case is slightly complicated, I have secondary kidney cancer which has spread to my lung, liver and brain, so it was always a case of how can we slow things down rather than cure what I have.

I had 10 cycles in total which if I’m honest went very well. I was given anti sickness tablets and something to control diarrhoea just in case but apart from one small bout when I had my second infusion, I didn’t need them.

I hope it goes well for you.

Thankyou so much for spending the time to reply you've been a great help i wish you all the very best for the future x

Hi there. My husband is on a combination of these medications. Avelumab fortnightly by infusion and Axitinib twice daily by mouth. 
He has just completed cycle 9 and has come a long way since he was diagnosed in March.

He has Kidney cancer which has spread to his lungs, too far advanced for an operation but this combination of treatment has shrunk his kidney tumour by half over the last 9 months. The lung tumours have also shrunk.

Side effects for him are sore mouth, sore hands and feet, high blood pressure which he is now on medication for and diarrhoea which is easily treated with Imodium. 

I hope you get on well with it and wish you all the best. 
X

I'm on this now. Kidney cancer now in lungs. Been on it about 9 months. On pills now for stomach cramps and blood pressure but aside from that all good so far and CT scans do show it's working and shrinking things in my lungs so that's good 

Hi Chester, I have been on that combination since January 2021. It began to work reducing some of the metastases in my lungs but has now stopped which is disappointing given the success rate with other patients at my hospital.

My oncologist has suggested Lenvatinib and Everolimus which we will discuss next Tuesday. If anyone has any experience of these drugs I would like to hear from them. The prognosis is 6 months to 18 months.

Originally following a radical nephrectomy in 2017 a life expectancy of 6 months to 18 months was the prognosis it seems a bit of a crystal ball scenario. Another member Buttercup has been living with her kidney cancer for 16 years.

Keep making short term plans and remain positive. My youngest grandson will perform in a West End concert in two weeks time and the eldest one is getting married in June so I need a new frock and bonnet! We went the see Harry Potter World last Thursday while it was still in Christmas dress which turned out to be amazing even for a husband who was reluctant and now tells people everyone should go to this amazing facility.

Good luck with your treatment.

Hi Zac1monty2 - sorry to hear A&A stopped working for you.  It was on the list of options my oncology team presented to me, successful for 70% apparently.  

No direct experience with these drugs but I found out info about them, as follows. . . . . . .  

I saw a really interesting webinar on kidney cancer uk about medical trials and my takeaway was that Lenvatinib and Everolimus was the current best big hitter drug therapy.    *checks notes* which say it was Pembrolizumab, lenvatinib.   Ah OK maybe I got confused - watch it here->  www.kcuk.org.uk/.../

There's a really interesting trial being led on Lenvatinib combination therapy by my consultant Stefan Symeonides at ECC.  I'm sure there are first line and second line options.   It's only just opened - I was tempted to join but went for nivo/ipi.  

Good luck xx