Paul's experience on the Cediranib (AZD2171) trial

[Bonni Hess]

Dear Paul,
Thank you for your thoughtful update and for sharing this wonderful and VERY encouraging news. We are SO Hopeful that the treatment will provide continued stabilization of your disease, and will look forward to your next update. We are Hoping that a
Phase 2 AZD2171 Clinical Trial will become available for ASPS patients in the United States sometime very soon as it certainly seems to offer great promise. Unfortunately, as Olga has indicated, the very few currently available Cediranib Clinical Trials in the United States do not include ASPS patients or have age restrictions and/or have preclusion criteria for patients with brain mets. It is my understanding that you had existing brain mets when you enrolled in the AZD2171 Clinical Trial in London. Had your brain mets been treated with radiation, Gamma Knife, or other radiosurgery so that you had proven three month brain met stability as is required by the Cediranib Clinical Trial in Canada? We will continue to closely follow the results of your continued AZD2171 treatment and any other ASPS patients participating in Cediranib Clinical Trials, and will hold very tight to Hope that this promising new treatment will prove to be the effective systemic treatment and cure which we are all seeking. In the meantime, please take care Paul, know that my and my family's special thoughts and best wishes are with you, and keep in touch with the Web site as you are able.
With special caring thoughts and continued Hope,
Bonni

[Amanda]

Hello Paul,
It has been a long time that you have not posted and i was wondering how you were doing?
Please, post back soon and let us know

In healing hopes for all!
Amanda

[Pauls Friend]

Hi Everyone in this Forum,

I'm afraid I have joined to give you some sad news about Paul. Last weekend he had to have brain surgery on a tumor. The surgery caused brain damage which resulted Paul going into a Coma. He passed away on the Sunday evening.

Sorry to bring you this bad news. Sorry about the lack of information, but I'm unsure of the exact details.

x

[Bonni Hess]

Dear Paul's Friend,
I am so deeply shocked and profoundly saddened about the devastating news of Paul's tragic loss. Paul's successful and relatively long term response to his Cediranib treatment had provided all of us in the ASPS Community with such great Hope, and we will be forever grateful for his having so graciously shared the information about this very promising new treatment with us. The great courage and determined spirit with which he fought his battle will remain an inspiration to us, and he will always be held very close in our hearts and our memories. Thank you for finding the strength and making the effort to so thoughtfully reach out to share this very difficult news. Please extend my deepest sympathy and most special caring to his family and his friends for the terrible loss of this wonderful young man who touched so many Lives and inspired so many in his MUCH too short Life.
Sharing your great sorrow and pain with a heart filled with profound sadness and deepest sympathy,
Bonni Hess

[Amanda]

Dear Friend,
I am so sorry to hear this news!
I to be honest am speachless to hear this i was under the impression he was doing so well and has invisioned him just feeling so well that he was staying off the boards as a break from all of this
To you and his family and friends i send hugs and i am so sorry for your loss!
Though we had never met he was still very special to us all we had a bond with ASPS...

In loving memories and light!

Amanda

[Fictional]

Dear Paul's Friend,

I'm very sorry to hear this too. Thank you for letting us know.

Paul was very generous with time and help on this forum, and he will be missed by all.

'F'

[Olga]

Dear Paul's Friend - we really appreciate you giving the consideration to our small community and taking your time to notify us about this sadly loss of Paul's life. As hard as it is for us to hear that one more young life is lost to that damn sarcoma, it is also very comforting to know that he did not suffer to long and that he had his friends by his side until the end, thank you for being there for Paul. The other thing that I want to point on is that we really need to collect all the info - sad or hopeful, because every bit of the information is valuable when we deal with such a rare disease. My own lesson from the situation with Paul's brain tumor is that clinical trials are only what they are - clinical trials, we should not leap to any preliminary conclusions re. the expected efficacy of the drug before it is still in the trials and ignore other more definite treatments that are currently available, for example Cyber Knife or other types of the radio surgery should be used to treat brain mets as early as possible without the delay caused by waiting to see if the experimental drug is doing something...And please everyone, have your brain scanned MRI at least once a year or even better once in 6 month.