My husband was diagnosed with stage 4 clear cell renal cell carcinoma with lung mets back in early March. He was quite poorly at that time, very anaemic, no energy, huge weight loss, literally wasting away before my eyes. We were told from the outset that his condition was incurable but treatable, with the treatment aiming to improve his symptoms and improve his long term survival prognosis.
He has been on Avelumab and Axitinib for 7 weeks and what a difference it has made. His cough has pretty much gone, he has gained half a stone and his appetite is much improved, he is stronger and happier in himself. There have been side effects of this treatment, mainly skin problems, itchiness, a rash which is mainly on his scalp making it difficult to apply creams etc, and more recently in the last week, sore and achy joints, particularly his knees, a couple of episodes of diarrhoea but nothing too bad. He will stay on this treatment until it stops working or the side effects get unmanageable.
What are other people experiences of this combination of drugs. We are only just at the start but it seems like he has responded very positively to it. At what point should he get a ct scan to assess if the tumour has shrunk and by how much. How long do people generally stay on this combination, what do we need to look out for, we know about the potential for high blood pressure but no problems so far with this.
These are all questions we need to ask his consultant I guess.
He has a telephone consultation with either his consultant or dedicated cancer nurse a couple of days after each infusion but since starting the treatment he has not had a face to face appointment, although he does see nurses and doctors when he goes for his infusions once a fortnight.
I am also a bit confused about his level of immunity to viral and bacterial infections in general. We were given a warning about sepsis right at the start but, is he classed as immunosuppessed on this treatment, should he be avoiding contact with other people??
As he feels better we are wanting to go out to places more but I worry about him catching something.
If anyone has any advice or info which we may find helpful it would be good to hear.
Anyway, on the whole we are feeling much more positive, long may it continue.
xxxx
Hello, thank you for responding.
yes, I always have lots of questions, the consultant must dread me going in to the appointments too. Trouble is, I always want the answers right now 
.
We have just had an appointment for a scan in mid July so that will be 3 months in to treatment.
Fingers crossed
xx
