It's been a while, again!!

Nananaps . Hi Nana, Good to her from you but sorry things don't seem to be going your way at the moment. We know some treatments carry on working after treatment finishes, so hopefully things may improve. Good luck with the radiotherapy. I had the full radiotherapy treatment and so far it has been good for me. Best wishes.

Hi rily,

Thanks for the reply, I hope that something kicks in! I feel great compared to when this journey started back in January! I think that's why I feel like a fraud. I am having a short 5 day course of radiotherapy so hopefully that will sort out the frequency and lessen the debris. I should feel fine then.

I hope you are keeping well

Nana x

Hi Nana,

I had immunotherapy (nivolumab) after chemo and the cystoscopy to prevent metastases. In my case it worked a bit too well and I ended up having peripheral neuropathy - usually described as pins & needles in hands and feet though mine was more like pains and numbness, especially in the feet. Although as a positive,  it did  make my hair grow back curly - quite liked that and it lasted 1 year

They stopped it after 3 months out of 12 and stuffed me full of steroids which got the fingers ok and left the feet a bit painful and also didn't much help my bones. The oncologist said they'd have carried on if this was the primary attempt at cure but not as a follow up (so she will have some wiggle room in case it does come back somewhere).

Good luck with everything

Latestart

Good that you do feel well - long may that last. Best wishes.

Thanks teasswill

Hi Latestart

That's quite funny, my hair is growing back after thinning on the chemo but I look like a German shepard dog, it is multi coloured ha ha 

Yes mine was grey/white but came back the old light brown. Now it's brown at the rear and grey with blond highlights elsewhere. Even funnier, pubic hair was straight like a fringe. Though it's worn off now.

I suppose it means the immunotherapy is having some effect and might even be doing what they wanted it to do.

How funny! Mine was greying but coloured brown I now have a mix of brown, blonde, red and grey that literally stands to attention with the longer bits that are left following suit. I am braving a semi permanent tomorrow to see if I can blend it all in, not sure how that will go! 

I hope this immunotherapy is doing something, I am manifesting that it is..

Hairdresser managed to trim it and told me it would be a year at least before it was back to normal - it was a bit longer. He sees lots of people during and after treatment.

The curly stuff at the back was a  very different texture- quite like brillo pad. The waves at the front soon straightened out, sadly.

Good luck. My oncologist said the fact there was a visible and felt reaction made it likely that it was also doing something where they wanted it to be. 

All the best,

Latestart