Hi back after a long break

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Hi , not new but been a while ,

Was diagnosed with kidney cancer in 2021 had my right kidney removed in may 2021 ,after my first CT scan in August found several small tumours in both lungs and started 6 months of immunotherapy which slowed the progression but after 6 months it wasn't working anymore I was lucky enough to be enrolled onto a new experiment test of cabozentinb oral tablets which at start was working and tumours decreased but again after 6 months it was found cancer had spread again into spine and liver.

I have been on a mix of oral presentation tablets for 9 months now and I had a course of radiotherapy for my lower back spine at Christmas.

It was doom and gloom with the consultant thinking it's the start of the end then in my last CT scan in January several rumors have completely gone and everything stable.

It's a long journey I have thought of giving up several times with the side effects so bad at times ,I don't look sick or feel poorly but I did give up work at Christmas to make some memories with my wife whilst I can (only 52)

Just keep going even when it sounds and looks bad you never know what's round the corner .

Thanks for reading all the best keep smiling

Ryan

Ghaz 8 months ago

Stay strong, no body knows what is round the corner x

Starlady 8 months ago

Hi, thanks for this, it gives hope! I am due for a CT scan at the end of April, which will be 5 months after my nephrectomy and it is a scary prospect that something might be found. So it's good to know there are other treatments that have a good chance of working if there is anything and also that you might have tough patches but get through them.

Still_here 8 months ago in reply to Starlady

Hi Star Lady,

Fingers crossed for April and yes it's very scary just remember the hospital and doctors aren't going to give up on you if anything is found it's going to be found at an early stage and very treatable. Keep going I know it's just words but try not to worry to much keep positive it really helps.

Starlady 8 months ago in reply to Still_here

Thank you so much.

Vanmanmikey 8 months ago

Hi Ryan

Glad to hear that your still here and looks like you have been through the mill and I understand what you have been through.

I agree with you that you need to stay positive which I know is not that easy. I have similar experience with my radical surgery with chemotherapy and side effects and also the extra issues with growth's on my lungs and my lymph nodes which may be related to the chemotherapy.

I had my 6 monthly scan last week and I have the waiting to see if test is clear after a small growth on last scan.

Thanks for sharing your story and hope it helps someone else going through this to show that they are not alone.

Keep going and stay positive.

Mike

Nettywill 8 months ago

That’s you that really helps

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Hi back after a long break