General cancer discussions

If you’d like to talk about something that isn’t covered in our other groups, come here to start a discussion or to see other conversations. Other people may be hoping to talk about the same thing.

Sutent - a success story (of sorts)

bob jk
Posted by
there I told you I was lethargic. I meant to ask if anyone had woken during the night coughing and leaving a disgusting taste in their mouth. It also feels like grains in the back of my throat.(not nice)
Posted by
Hi, Missmonkey and Bob JK,
I have just got home from my trip in the motorhome, we left Manchester and headed for Grimsby, worked our way down the east coast , across the south coast to Exeter then headed north ending up in Wales and then Angelsey. It was a very enjoyable trip and we visited many places i hadent seen and luckerly avoided the storms.
My best news is though after my 3 month scan i was told all my tumours had shrank by 10%, my consultant was really pleased. I just hope that continues as i have been told your body gets use to the drug and it stops working but everyone reacts differently so ill just keep my fingers crossed.
My side effects are still the same but i have noticed if i eat rich food ( which i did when on my hols )late at night i wake up feeling sick with a soapy taste in my mouth.
I concider myself really lucky to be on Sutent as so many people cant get it, so the side effects i have is a small price to pay for life, and luckerly they are not as bad as some people get my main problem is the weakness in my legs so i cant walk very far.
Good luck to all who read this, stay strong and possitive, Best Regards Sweetiepie.
bob jk
Posted by
Hi sweetiepie

A real positive result, well done and glad you had such an enjoyable trip

Posted by
hi, just read this posting,have not been on properly for a couple of weeks,wot with ant in hospital and we had a wee break to caravan on coast of scotland. good to see the 10% shrinkage sweetiepie . i never thought of body getting used to the drug.i wonder if thats wot happened to ant. our minds have been all over the place recently,from being told was initially on lungs,then biopsy shows no spread,no further shrinkage,new tumours growing. our news changes every time we go to see the oncologist. no wonder we get so emotionally drained.
keep fighting the fight everyone. !! i am sharing the love on this sunday morning.

xxxxxx (((((( )))))

Posted by

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?


Posted by
Brilliant news Sweetiepie. Your trip sounded great fun too.All is looking good for you - HOORAYXXXXXX
Posted by

Hello Nicolai

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

Posted by
I want to send my love and thanks to Bob jk, Autumn, Micky 333 for your advice and information and really wish you the best of luck! Big hugs to you all and to everyone affected by this! Em xxxxxxxxxx
Posted by
hi all
Ive never written on this boad before (or even heard of it to be honest ) but decided to take a lok today after watching the news this morning. My mum was diagnosed on 9th June and our world fell apart! We were told there was no cure as her cancer was too advanced. The days that followed went by in a grey haze as we cried together. Then my mum being the wonderfull woman she is, told us we all had to go back to our familys and jobs and live life to the full.
About 4 weeks ago we had the fantastic news that she was going to be given Sutent - my mum was being given a chance!!!! She has now had the biopsy and bone scan needed prior to starting the medication. Her nurse explained that her case would be going before a panel of doctors today to decide when she could start taking Sutent.
My dad called me in a terrible state this morning from work asking if i'd seen the news? Ive contacted the hospital and am now waiting to hear whats going on. Surely no-one could be as cruel as to give someone a small glimmer of hope only to take it away again? Were all at a complete loss today knowing someone is making a decision about my mums life ??
In herself, she doesnt appear to be any different to how she was a year ago. She's still active and were all still laughing together.
I have been amazed by the things I have read on this site as I often feel very alone and almost as if I am loosing my mind with the shear disbelief of it all.
ps..Nikolai, i'll be buying my mum some of the toothpaste - thanks for the heads up on this one.
Posted by
Hi Missmonkey and All,
Thanks for your good wishes, i am stll on sutent and after my 3rd 3 monthly scan it is still working so im keeping my fingers crossed its carries on. We had a great time travelling in the motorhome around Scotland, what a beautiful place and all being well were off again this week. Its been the best thing ever getting our motor home as it is literally home from home and anything i need is to hand. How are things with you? I think were all shocked and disgusted at the decision NICE has made let hope its reversed, i feel really lucky ive got it as 17 monthe ago i was given a year to live. Keep smiling, speak soon love Fay.
emma spain
Posted by
I have recently joined the site and am very interested to read about Sutent, as I am picking up my supply on tuesday. I have had breast cancer secondary lung and now secondary liver (15 mestatsis) and abdomen. My doctor is wonderful and I have been with her since first diagnosed over 4 and a half years ago. I have had 7 chemo drugs in total lost my hair 4 times (growing as we speak) and always kept wonderful on the whole, apart from the odd blip. I have taken a note of the toothpaste which I will buy immediately as Ive done the sore mouth and its not nice! I live in Spain and I am very lucky as most drugs are available here with permission from madrid, hence the Sutent and also various other drugs that have been made available to me at great expense to the health system. I have always kept myself as positive as possible but have been feeling a little low at times recently after being told of the recent spread, however am very uplifted to read the various postings on Sutent. You will note I dont have kidney cancer which it is recommended for, as I said my doctor will try anything for me, as, and I quote "you always look so well!!" Fingers crossed for me guys!
Posted by

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.