Hi. Just an update on my previous post re my partner Brian.Saw the encologist yesterday and to start on a drug called sutent in 2 weeks as this will be 6 weeks post surgery.As cancer is in lymph nodes & lung this treatment is to slow it down only-we were told average life expectancy 2 1/2 years which was a huge shock.Anyone else on sutent or know of someone who was on it.Aware of side effects but looking for help on how to manage them for the best x
My husband was diagnosed about 13 months ago with kidney cancer which had already spread to his rib. He was told it was incurable & started on Sutent. He is now on his 9th cycle & doing very well. His kidney tumour has shrunk & the one on his rib has not grown & may possibly also be slightly smaller. There is no spread anywhere else.
He has had no bad side effects apart from a little tiredness. His dose was reduced from 50mg to 37.5 due to a drop in platelets & he is now on blood pressure meds but he had high normal bp before starting the Sutent.
He manages his pain with co-codomol but that varies day to day & some days he doesn't need it.
We know he cannot be cured but hopefully the Sutent will carry on holding back the progress of the cancer.
My husband was diagnosed about 13 months ago with kidney cancer which had already spread to his rib. He was told it was incurable & started on Sutent. He is now on his 9th cycle & doing very well. His kidney tumour has shrunk & the one on his rib has not grown & may possibly also be slightly smaller. There is no spread anywhere else.
He has had no bad side effects apart from a little tiredness. His dose was reduced from 50mg to 37.5 due to a drop in platelets & he is now on blood pressure meds but he had high normal bp before starting the Sutent.
He manages his pain with co-codomol but that varies day to day & some days he doesn't need it.
We know he cannot be cured but hopefully the Sutent will carry on holding back the progress of the cancer.
Im Nathan, i am 41 ( 42 in march )... heres my experince with Sutent and Kidney Cancer
I was diagnosed with Kidney Cancer 2011 and had a radical nephractomy and had the Kidney, surrounding tissue, adrianl gland removed. Got the all clear !, but Jan 2012 i was having breathing problems and after scans, x-rays they told me the kidney cancer ( RCC ) had metasites to my Lungs... So i have currently 4/5 tumours ranging from 1.3cm to 1.8 cm in the plural ( between chest and lungs )...
I was put onto Sutent 50mg in Jan 2012 and it reduced all my mets and kept them small for nearly 2 years ( about 17/18 cycles ).... after 6 months i reduced down to 37.5mg because the side effects were tough going.
Unfortunaly sutent has stopped working for me, and my mets have grown and now one has spread to one of my ribs. I have now started Axnitib, only on it 2 weeks so waiting to see what happens with it.
Sutent i found side effects for me were: Tiredness, Mild Nausa, General Aches & Pains, any old scars, cuts etc they became painful... My hair and beard all turned grey, i have to shave my beard of as i got a skin rash and to put cream on, i had to remove the beard., I lost my sense of taste about 17/18 days into the cycle, and returned the 2nd week into my break. Besides that i coped well. I am told this new drug should have similar effects but milder....
Im currently on 60mg Morphne MST (30m morning, 30mg nite) and then 10-40 servadol throughtout the day when needed... this is for the pain especially round the rib. Im also on bloodpressure meds.
I personally know of 2 other people who have been on sutent for 4 and 6 years..... It will stop working at some stage, but i got 2 years out it...
Hi Nathan. Thank you for replying with such positive results.Brian is hoping to return to work soon to get some normality back to his life.I hope the sutent works as long as possible and then,like you, we would try another drug to achieve as much time as possible. Steph
