Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear ASPS Community Friends,
I continue to communicate through personal e-mail with Clare Clarke who is an 18 year ASPS survivor from England. Clare has graciously given me permission to post updates about her. Previous updates about Clare were posted in the Cediranib and Axitinib Clinical Trial topics on this Board, but since she is no longer participating in either of those Trials, I am starting a thread for her new updates in this Personal Stories and Updates section. As per my most recent update from Clare, she is thankfully continuing to do well with stable disease . The following is an excerpt from her June 9th response to me:
"I continue to be fine. My disease is stable and the chest pains that I've had are now minimal and may be due to other stress related situations this year. So far now, I know that I'm lucky in that I strive to live my life and not dwell too much on my disease."
Clare and her successful ASPS battle continue to be a source of great inspiration and Hope for all of us in the ASPS Community, and my very best wishes are with her for continued stable disease.
With special caring thoughts and continued Hope,
Bonni

Wonderful news! <3

Dear ASPS Community Friends,
I just received a thoughtful e-mail update from Clare with VERY good and encouraging news!! This news is especially significant for former Cediranib patients who had initial positive responses to the drug before either becoming unable to tolerate the negative side effects (as in Clare's case), or developing progression which resulted in them being taken off of the Cediranib. Since Clare is now back on Cediranib, this post should/will probably be moved to the Cediranib topic.

Dear Bonni,
Must tell you some good news. I started for real on cediranib at the beginning of December, the trial having been unblinded. Just had the results of my first 8 weeks on it! Approx 25% reduction in my largest lung lesion which was about 5cm! So I'm not resistant, it can work again! Very good news for all.
Best wishes Clare Clarke (: xx

With special caring thoughts and continued Hope,
Bonni

Clare and Bonni - thank you for the information. We are very happy to hear that Clare is responding again to cediranib. It is definitely very interesting and valuable information.
It is my understanding that Clare who was the first ASPS patient on cediranib with the extremely dramatic even life saving response lasting for a long time and presented in a scientific articles and conferences has never developed a resistance to cediranib but choose to go off it due to a build up in toxicity and its effect on her quality of life.
It is unknown if the re-challenge by cediranib would be effective if the person develops resistance to it. Good to know that the responder to it remains to be a responder after the year long off it - or may be it even increases the chance of the yet another dramatic response to it. It would have been very interesting to know how are the side effects the second time around and if Dr. Judson team has found any way to reduce the toxicity of the drug.

Dear ASPS Community Friends,
I received the following additional information from Clare today regarding her renewed Cediranib treatment:

My side effects are not so severe this time. My throat has had no ulcers and it is only my feet and hands that are beginning to go a bit ropey.
I know that on the site everyone is very worried about rebound, but that has not been my experience. Why is it so different for some? Since I stopped my treatment in 2008 I've only had 1cm regrowth of my largest lesion, including some months on axinitib which also may have helped to keep things pretty stable. There may even be the case that by stopping the drug one does not build up resistance?

Regarding your comments Olga, I too am wondering if Cediranib would also be effective if the patient had previously developed resistance to it and experienced disease progression while still taking the drug, as opposed to Clare who had never developed resistance to the Cediranib or disease progression while she was on it, but instead voluntarily discontinued taking it due to the debilitating side effects. As with everything with this very challenging disease there are so many questions and not enough answers or currently available data to make any definitive conclusions. This illustrates the critical importance of everyone in the ASPS Community and on this Board actively sharing their anecdotal treatment information so that we can all learn from each other's experiences. The more information we all have, the better prepared and more knowledgeable we can be to make difficult treatment decisions.
With special caring thoughts and continued Hope,
Bonni