Avelumab and Axitinib

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So, though not curable, hubs and I met his oncology consultant today in the Churchill hospital in Oxford, and these two drugs have been suggested to try to buy us more time, hopefully more quality time.

Hospice referral too so they can manage nausea, pain and poor appetite better than the hard-to-reach GP’s. The hospice should get in contact by the end of the week, they suggested.

We see the oncologist again next week to agree and for hubs to sign consent, then treatment could start by the end of that week. One drug is daily tablets, the other a fortnightly infusion which can only be done in Oxford again. 

Would welcome any thoughts and help with info although he’s been given leaflets....

Hugs xxx

  • Hi @y 

    I did answer this days ago bu it I seems to have to disappeared into the ether!

    There are several folk on this combo in the group. I'm hoping someone will answer your post, coz I only know personally about Pazopanib. Failing that, you can search under the 2 treatments for more info. There's quite a lot on them. 

    The good news is that kidney cancer is a slow grower, compared with other cancers, eg I've been living with mine for 16 years.  

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Sadly hubs’ cancer seems quite aggressive, having been diagnosed in January it had already spread to gut, liver and one lymph node in a lung. He is aware of the developing lump in the right side of abdomen the last week or so too. 
    We are just hoping he tolerates it well so that it gives us some quality time to enjoy the very new motorhome we bought just before the first lockdown (so far in over a year we’ve just had 4 nights away in it!) 

    Hugs xxx

    Moomy

  • Hi Moomy. 
    My husband has just started on Avelumab and Axitinib. He was diagnosed in March with a 15 cm tumour on his left kidney and multiple lung metastises. Shocked doesn’t come close. He thought his asthma was getting worse as he had a cough for a few months, no symptoms which would suggest a kidney tumour, weight loss and tiredness and was attributed to anemia but further test then revealed the tumour. 
    Honestly, the Avelumab infusion was a bit scary as he had an allergic reaction to it but aside from that it was fine, and he has been on the axitinib for a week and a half. No nausea, slightly sore mouth and hoarse voice and really tired but other than that all ok. He has his second infusion on Monday which we  are a bit worried about given what happened last time but measures are in place now to limit the chance of that happening again. 
    I would love to know how you get on. 

    Good Luck. Xx

  • Thank you for posting! I’m gutted that it’s taken so long to get hubs to this point, I knew he had cancer in January, he was told it was possible but actually getting a viable biopsy has proved all but impossible! They are going to treat it as RCC but have no idea of sub-type, even after 3 biopsies. 
    Sadly he has other problems, the worst being spinal stenosis (I suspect from all the rugby he played at school and for his town teams) so is quite disabled. He had emergency surgery at the end of March to bypass duodenum as the cancer had already blocked that, so he is still just in recovery mode and not eating well, and being sick every 2-3 days in spite of metaclopromide. 

    please keep in touch 

    Hugs xxx

    Moomy

  • Hi Moomy

    It sounds as though your poor hubby is really going through it at the moment. I hope he starts to feel a little better soon. If the Avelumab and Axitinib can lessen his symptoms, slow down the disease progression and give you some more time it’s worth giving it a go. I know this is all we can hope for in our situation.

    We have set some small goals, a weekend away, sons graduation, birthdays, Christmas. Just take it a day at a time. 

    xxx

    Gigi.

    Xxx

  • Gosh I really hope it can help him, he’s been going downhill far too fast! 
    I too hope for some quality time, maybe with the help of our local hospice at home team. We’ve a motorhome awaiting that’s only had 4 nights away so far! 

    hugs xxx

    Moomy

  • Now that lockdown is easing let’s hope you can get away in it over the Summer. Keeping everything crossed for you.

    Keep in touch

    xxx

    Gigi

    xxx

  • Hello , my very best wishes to you and your husband. 

    As a brief reply to your post, I’ll just say that I have been on the Avelumab / Axitinib combination for more than a year. Over that time CT scans showed very good reduction of the mets on my lungs and in my back, and what side effects I did experience were very manageable. 

    After my first infusion, I was sent home with Domperidone tablets to treat nausea, and Loperamide capsules for diarrhoea, these being the most expected. As it turned out, I used only a few of the former and the box of the latter remains unopened. At one infusion, when I mentioned a sore mouth, they gave me a special mouthwash, Caphosol, which quickly did the trick and it never became a long term problem. 

    (I was on the 5mg dose of the Axitinib tablets. Recently, that was increased to 7mg twice a day which, for me, was what triggered more severe side effects - and I’m consequently on a short treatment break. But that’s a separate story.) 


    With regard to ’s husband’s experience: for my first few infusions I was started off with paracetamol and intravenous antihistamine as a precaution against an allergic reaction. It makes you very woozy for about half an hour. Did they not do that at your husband’s first treatment, Gigi? Hello, by the way.

    -Mark  

  • Thank you, that sounds so encouraging! And we need every bit of that at present!

    Hugs xxx

    Moomy

  • Hello forgottonworks

    yes, he did have an antihistamine before treatment (not sure about paracetamol). Towards the end of the infusion he started to experience chills and uncontrolable shaking, he was conscious and responsive the whole time, just couldnt stop shaking. He has got oral steroids and antihistamine to take before his next infusion on Monday. I have joked he should take an overnight bag with him on Monday in case it happens again and they keep him in. 
    It’s so good to hear that you have had a positive response to the combination long term. It gives us hope and a reason to be positive. 

    Gigi.