Good Scan Result

Hello fellow Warriors!

Had a good scan result yesterday and wanted you all to know. I have been on sutent for a year now - initially I had a 20% shrinkage to both of my tumours and then a very small shrinkage. After that my largest tumour changed shape - nodules appeared at the back (two in all) and last CT it was a bit bigger overall but I was stable and my smaller tumour was the same size as before. Yesterday I had a CT and my Professor was thrilled. My smallest tumour has necrosis around the outside which is dead tissue and the Prof says there is no reason why it should not now just die (fingers crossed) - the other tumour changed shape again, the two nodules at the back have gone but one has appeared at the front - the tumour has not grown which is also a good sign - so thats a year into treatment before this has happened which shows you never know with this drug how its going to affect tumours.

Good luck to everyone. Keep fighting!

Railwayman 

Hi Railwayman. Great to hear you are doing well and letting others know about it. There must be others out there with similar stories but don't post them. My situation is similar to yours, a year on Sutent and I am doing very well. Evey scan I have had has shown a gradual shrinkage to my growths and with scans due again next week my fingers are crossed. I'll let you know how I go. The treatment is knocking the body about a bit but so far my oncologist has not changed the 50 mg dosage. I get all the side affects sometimes bad, other times not so bad. The good thing going for me is that I have still managed to get to work, abit with reduced hours, and my recovery rate during my 2 weeks off is very rapid. If you can handle it all chances are you will survive or at the very least prolong your life a lot further than the original prognosis. We need more stories like ours on this site to encourage others to hang in there and let other sufferers know there is light at the end of the tunnel. We are maybe some of the lucky ones as I know by reading all posts that our treatment does not work for everyone and that it may stop working for us. But while its going well we should get our message out and give encouragement. Please more positive posts there must be a lot more.    

Thanks for your reply. You are so right. I am in touch with Mary and Joe in Canada, Joe has a different history in that he has had a variety of drugs over the years culminating in sutent and he is now on his 11th cycle. Joe has beaten this for more than 5 years which goes to show there are other drugs that help and there are more in the pipleine. 

I was at the Royal Marsden in London where I am being treated and I bumped into another guy who has been on sutent three years and is doing well and my onc nurse says this is not entirely uncommon - the stats are improving all the time.  As with everything in life - its all uncertain some do better on one thing than another - some win some lose. But we have to try. Good luck for your scan.

Railwayman

On 3/1/2008 Railwayman wrote:

Hello fellow Warriors!

Had a good scan result yesterday and wanted you all to know. I have been on sutent for a year now - initially I had a 20% shrinkage to both of my tumours and then a very small shrinkage. After that my largest tumour changed shape - nodules appeared at the back (two in all) and last CT it was a bit bigger overall but I was stable and my smaller tumour was the same size as before. Yesterday I had a CT and my Professor was thrilled. My smallest tumour has necrosis around the outside which is dead tissue and the Prof says there is no reason why it should not now just die (fingers crossed) - the other tumour changed shape again, the two nodules at the back have gone but one has appeared at the front - the tumour has not grown which is also a good sign - so thats a year into treatment before this has happened which shows you never know with this drug how its going to affect tumours.

Good luck to everyone. Keep fighting!

Railwayman 

 

    

congrats to you!  my husband starts treatment in 2 weeks with either sutent or torisel, have you heard anything about torisel good or bad?  we are trying to decide which one we should start with.  He was diagnosed Nov.2,'07, kidney removed Dec.11, radiation to brain lesion that ended Feb.27,'08 and start sutent or torisel March 12 or so for lung mets.  I so appreciate hearing positive news- we have young kids and I love my husband so much, I want to keep him around! 

Thank You

Mamma V

On 3/2/2008 Railwayman wrote:

Thanks for your reply. You are so right. I am in touch with Mary and Joe in Canada, Joe has a different history in that he has had a variety of drugs over the years culminating in sutent and he is now on his 11th cycle. Joe has beaten this for more than 5 years which goes to show there are other drugs that help and there are more in the pipleine. 

I was at the Royal Marsden in London where I am being treated and I bumped into another guy who has been on sutent three years and is doing well and my onc nurse says this is not entirely uncommon - the stats are improving all the time.  As with everything in life - its all uncertain some do better on one thing than another - some win some lose. But we have to try. Good luck for your scan.

 

Railwayman

 

Very happy to hear of your results! My dad is starting his second round of sutent now, and he will get a PET/CT scan in 6 weeks.  We are praying for results like yours. All the best!

Laura

Hi Railwayman and other visitors to this message,

                                                                      Just letting you know I had my latest scans 2 weeks ago and things are still going fantastic for me. SUTENT is doing it's job. My last three scans have showed no improvement but hey it's getting no worse. 14 months in and my Cancer has all but gone and no new signs of spreading anywhere.

Hope this give encouragement to all who are the tablets. Like me you probably feel pretty sh..ty some days with the side effects, some worse than others. Hang in there, think of the alternative..........it aint good. If Sutent doesn't work for you try something else, what have you got to lose. We have a horrible disease and up till a few years ago there was nothing on the market to help us. Thousands are still sucumming to it's ultimate goal. I feel so fortunate that I have been given a chance to live a lot longer and I am going to go for it. I get 3 good weeks out of 6 and I make the most of them. Life's good.

Hope this helps. Best wishes to all who are undergoing treatment.  

Great news on the result! I agree we have nothing to lose and everything to gain from just plugging away at this.

Railwayman