Hi Sutent Users,
I read this post with interest as I am on sutent (kind of) and as there is not much information about this drug and its workings perhaps we could keep this one going to help each other.
I took my 1st course some time ago now and should have been at the end of cycle 2 now. The first cycle didn't really give me many side effects other than the sore mouth and tiredness already mentioned. I have found that my skin on my fingers swells and splits really easily though a bit like paper cuts that just appear from nowhere and my beard has changed to complete white from brownish ginger (I think I like that one!!).
However due to pain and swelling lymph nodes in my back I am now undergoing radiotherapy for a week, ends next Thursday, and then the Docs will start up the sutent again for the 2nd cycle. I am hoping that the radiotherapy works so I can reduce the morphine needs and think about going back to work again!!The kidney cancer itself has not really caused much trouble (lol) so far, its all been the other bits where it lands and causes trouble that has done things to me so I am looking forward to re-starting this drug and getting the benefits that it does seem to supply. A lady next to me in clinic last week told me she had been on the drug since it was on trial 2 years ago and finds that an average 20% shrinkage has been achieved in her case so when you compare that to the interferon its a brilliant result!!I know its difficult to get hold of and the PCT's often won't prescribe it at all so the more we can publicise its good results the better for those who cannot get it at the moment.I will try and update this post with my ongoing treatments and outcomes and perhaps then we can send these notes and postings onto the GVMNT people and sites who make these arbitrary decisions about our futures!Any thoughts anyone?
I found your story truly inspirational and as I have just found out that my Mum's cancer has spread to many places and she has been offered Sutent, I ordered the toothpaste you recommended. Also, as they were having trouble with the website that day, I told the man who rang me your story and how I found out about this and he was very interested! My Mum has just started on Sutent today and I am very scared for her but reading your story gives me hope! Very important at the moment!! I really wish that it keeps working for you (and does for my Mum!) and wanted to thank you for sharing your story! Lots of love and positive thoughts coming your way!! Thanks again and if my Mum finds any other helpful things I will keep you posted. Take care and keep smiling!Em xxxxxxxxx
Hi Nikolai, read about your nice to read about how tough you have been. I had been for RCC one kidney was removed in 2009. In 2016 I was diagonised with RCC to lungs since then I have been on Sutent they have been shrinking and then is stopped. I was then taking medication for my kidney Sodium Biocarboate with Nefrocaps then all of a sudden it shrunk to 5mm down. I have been on Sutent for nearly 2 years when i get cracks on my feet and hands i use coconut oil and it avoids pain they do crack but softly. I go to work do my usual routine teaching in church. Sometime it get tough and think how far you can carry on. But with the break period of a week between you revive. Best of luck to the ones who are still carrying on. Live each day and to the fullest.
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