Although treatment on pazopanib is going well, we all know this is mainly life prolonging and has an end date in its effectiveness over time, I'm currently at 1200mg daily, what are folks doing in second line treatments
I think treatment is very specific to patient, but since stopping Paz my husband has been on Nivolumab (a treatment which involves and infusion every two weeks) and is now on Cabozantinib (another TKI, like Paz).
PS - I noticed that you posted on Friday. I rarely check the Macmillan online community, but there is a great Facebook page you may not be aware of (UK Kidney Cancer Support Network) which has over 800 members. It might be worth joining if you are on Facebook as the replies are often very quick and there are lots of people to offer advice on different treatment options.
I was on Pazapanib for 4 years until it stopped working. Then immunotherapy Nivolumab for a short while. Started with awful body rash (incredibly itchy) in October and so far, after endless creams, steroids, anti-hisomines, nothing has worked. It is utterly miserable and I am worried about the lack of treatment...any others suffered this reaction ....??
I have been on Nivolumab for about 2 years and the worst side effect by far has been the rash it creates. You are right, nothing works and a referral to the skin clinic has also proved fruitless. I think my oncology consultant has run out of options where the rash is concerned so I now just get on with it. As you say it is miserable, keeps you awake at night and for me has been quite unsightly on my forearms. Last month I reached my limit with this and other side effects from Nivolumab, so I have informed my consultant that I wish to discontinue further treatment, my reason being that I felt the immunotherapy was doing more harm than good. Whilst I sympathise with you greatly where the rash is concerned I am not suggesting you take the same decision as I have, as each case must be assessed medically by the professionals. The Nivolumab rash however is a significant side effect so keep telling your oncology consultant and GP about the suffering that this is causing.
