Secondary cancer

Hi CMGAZ just happened to spot your post. You might find it useful to join the Kidney cancer and Family and friends groups.

There are several treatment for secondaries from kidney cancer - mainly TKIs, such as Pazopanib and immunotheraphy, which is often a combo of 2' different drugs - some by oral drugs, some IV ( like chemo). A number of ppl in the group are on Pazopanib, eg myself, @gragon,  n a no on immunotheraphy eg 

Both Gragon n I have been on Pazopanib for years. He's on a trial n I just take it regularly.Im now on 400mg/ day n he's on 800mg

One of the things to remember is that kidney cancer is a slow grower, compared with other cancers.There are also new drugs being developed all the time to deal with it.

Sue

Aw thanks for the reply Sue. I’ll have a look at the family and friends group. It’s reassuring to hear that there are treatments out there and that many have been on it for years.

Take care

Claire x

1. Hi Claire, my mum was diagnosed in December 2018 and had a full nephrectomy and ureter removed by keyhole robotics in January 2019. Followed by four cycles of adjuvant chemo. Since then she has quarterly scans and quarterly cystoscopies. The latter is because she had TCC of the renal pelvis which is at the top of the ureter and not inside the kidney. My mum is under one of the best hospitals in the UK that specialise in kidney cancer, The Royal Free. Your father requires quarterly scans, six monthly is not enough. You also need to speak with your fathers consultants secretary to chase results when they’re late and to get his treatment plan sorted ASAP. Keep on and do not worry about calling, push push push.  It’s crucifying waiting for results. It may be best if you chase the hospital yourself, I dealt with all my mums  treatment, operation and now check ups. Good luck and God Bless your father. 

Hi CMGAZ, I agree with   3 monthly scans are better than 6 monthly, especially cif they then take ages with the results!

I had a radical nephrectomy in 2005 n still have 3 to 4 monthly CT scans. They have discovered umpteen secondaries in that time ( see profile for details) n dealt with them accordingly - which is why I'm still here.

Wishing you n your dad a healthy 2021,

Sue

Hi,

thanks for your reply. My dad has a scan booked this Sunday after chasing up an appointment. I’ve told him if he hasn’t heard anything after two weeks he needs to cause up the results.

I’m hoping both my Mum and Dad are going to keep on now, I’ve told them that you have to become your own Project Manager. 

Best of luck to you too

Claire

Hi Buttercuo

Thank you for taking the time to reply. My dad has his scan booked for Sunday. I’m going to keep on at them this time to make sure we get the results sooner rather than later.

Hope you are keeping well

Wishing you all the best

Claire