Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Well I didn't see that coming!

Posted by

Hi everyone,

I know I haven't been about for a few days, despite reading some posts that I thought I would quite like to reply to, and my apologies for that.  I have also posted this in the incurables group so my apologies to anyone who is a member of both groups and comes across it twice.

I have had some pain in my abdomen over the last few months and as I am currently on a three month treatment break, I knew that it was unlikely to be any side effects from my medication (Pazopanib). I was having some issues with constipation from the painkillers so decided to stop the pain meds to see what happened. The pain become more localised situated over the area of my abdomen where the biggest tumours are and the area where part of my kidney was removed where another tumour is located.

I know the tumours grow again when I am on a treatment break and hoped that when I went back on my meds it would resolve the issue.

My CT scan was last week and they managed to get the report quickly and my appointment with my oncologist was today. Today is co-incidentally the 5th anniversary of my being told that I had terminal kidney cancer so not an auspicious date in my personal history and I suspect that it was this plus a bit of scanxiety that stopped me posting

I went in and could not believe it when the Oncologist told me that although the tumours had grown, for the first time since I started the trial they had not grown sufficiently to meet the criteria for me to go back on the medication so I get a further three month treatment break! Although they cannot confirm it they think it likely that the pain is as a result of some necrosis in the tumours preventing them from growing as quickly as they have previously. If that is so then I can certainly live with the pain and in fact will take a bit more if it is available.

So I am free of the cancer meds for another three months which is certainly good news for Xmas. When I do go back on them one of the things that has often happened is that I can get diarrhoea after eating certain foods, the difficulty is that it is very rarely the same foods that affect me. It does make eating a bit of a Russian roulette until I work out what is causing it.

They have also asked me to sign more authorisation papers regarding the trial as they were supposed to be collating the results but I think that they have been slightly more complex than anticipated. Also that some people have managed to stay on the drug for so long with it still remaining effective so they are extending the trial for a bit longer.

So happy news and a five year milestone reached and passed.

Wishing you all the best,

Gragon xx

Posted by

Well done Gragon this is good news and you will be able to enjoy Christmas.

i am also offmthe drug for a Christmas 

best wishes for for the festive season 

Ruth age 67

 acc R submandibular gland wth lung mets liver met and brain mets 

Posted by

Very happy for you
Ihope you have a great Christmas. 
All the best,


I’m doing this the only way I can. One day at a time. 
Posted by

Well done

Enjoy your Xmas break!


Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Posted by

What lovely news! Merry Christmas to you and yours

Posted by

That's great news, i did start to worry reading the start of your post but so happy for you at the end, you're always there for us and have given me good advise for my husband. Have a lovely Christmas Gragon Xx

Sue Xx
Posted by

Fabulous news Gragon. Hope you’ve had a fab, very tasty  Christmas!