Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I started treatment w/ Sutent In Janruary of '10

I first began on a 37.5mgs dose which after 6 weeks proved to be to harsh on my body...I experienced: rash on my hands, sores on my foot,loose stool, my hair began to grow in blond...(and I am a brunette). As well as my thyroid and blood pressure became an issue.

So I was dropped down to a dose of 25mgs for 6 weeks, with a 1 week break following...and my body is responding well. I have been doing this since March '10. I am on thyroid meds and blood pressure meds. And everything is stable and I am doing well. Energy is great!!

I do appreciate the one week break...if I don't take it I experience nausea,diarrhea, and fatigue.

Dear April,
Thank you so much for sharing this important information regarding your Sutent treatment experience and results thus far. With the exception of the hair color lightening, The side effects which you have had are very similar to those experienced by our daughter Brittany and the other ASPS patients on this forum who are being treated with Cediranib which, like Sutent, is also an anti-angiogenic tyrosine kinase inhibitor (TKI). There is another ASPS patient named LCMA who is currently also on Sutent, and who has had stabilization of her disease for over a year since starting her Sutent treatment. If you would like to communicate with LCMA or follow her Sutent treatment experience and results I would be glad to give you her e-mail address and the link to her blog if you contact me at my e-mail address which is BonniHess@aol.com. In the meantime, please know how deeply appreciative I am of your thoughtful sharing of your treatment information on this Board, and know too that I will be continuing to hold you very close in my heart and most special thoughts. Take care April and keep in touch as you are able.
With deepest gratitude for your shared Sutent treatment information, special hugs, caring thoughts, and continued Hope,
Bonni Hess, mother of 28 year old Brittany who was diagnosed with ASPS in July 2001

Hello again April,
I just wanted to make a correction on my previous post which is that LCMA has been on Sutent and had disease stability for two years instead of one which is a great victory with this disease and reason for much Hope.
With more special caring thoughts, healing wishes, and continued Hope,
Bonni