Hello again.

Nice to have you back Gragon missed you sorry that you are having issues and hope the treatment that you receive will help you huge hugs xx

Hi Gragon. I too have kidney cancer and I am currently on pazopanib, I also have white hair now. It’s very encouraging for me to see that it kept you stable for 7 years. I hope your new regime is even more successful for you.  

Hi Gragon, lovely to see you back posting again. 

Sorry to hear that the increase in tumour size. Good luck with the treatment today. I hope this treatment gets you back in the stable club x 

Hello Gragon, I don't think we've met but it's very encouraging to hear that treatments have kept you going for 7 years. Good luck to you on the new regime and I hope the side effects are manageable for you. All good wishes, Rainie x

Hi Gragon

So nice to see you it has been a while.

Sorry you are having a few problems, will keep a watch to see how you are getting on, i wish you a smooth ride with the next lot of treatment, and that it does its work on the blighters.

Take Care Ellie x

Hello everyone,

Thank you for your responses, it has been very welcoming.  Although several of us have not met I have logged on now and again to keep up with what is happening.  Often enough to realise that you have played with the options your white hair gives you more than I have Richard.  I was on the Star trial which meant I took Pazopanib for six months then had a three month treatment break.  This resulted in my having white hair for six months before it gradually started to go back to gingery grey followed by it going white again.

More recently it remained white during any treatment breaks so I suspect that it might be my permanent colour now.

I'm hopeful that I am fine with any side effects as I responded quite well last time.  I am a bit concerned as we have a meal out booked for two weeks time and an apartment in the Lake District for a week in April and the one thing which I suffered most with at the start of the previous treatment was diarrhoea.  Probably the least serious side effect but one of the most socially awkward.  At one time I had a packet of baby wipes permanently in my back pocket and a spare pair of boxers in my coat pocket.

We haven't been away much during the last couple of years,  A very, very wet week in Whitby when we didn't get out as much as we would have liked due to the weather.  Then a week in Wells visiting my wife's mother which was lovely but was disrupted by my mother in law having to isolate for several days during our visit as she was called up for a minor operation in the local hospital.  So you can see why I'm hoping that our night out and trip away goes well so I am still looking forward to them.

All the best,

Gragon xx

Good luck with your new treatment Gragon, sorry to hear the previous treatment has stopped working. Fingers crossed for you

Tvman

I have been taking pazopanib constantly but I take a week or so break if I go on holiday or at Christmas etc. My consultant said that it stays in your system for quite a while so the odd break doesn’t hurt.  Clearly if you were 6 months on and 3 months off and it worked for 7 years then my odd week off won’t hurt which is comforting for me, thanks for that info.  As for the hair I am under increasing pressure from my wife and my hairdresser to go a shade of blue so that may happen lol