Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello all,
It is with some sadness that I need to report, belatedly, that Jordanne was taken off of the Cediranib trial during her last visit to NIH in May. She had one lung met near her heart that had started growing. When they looked closer at that they also realized that she had activity in her head and in her right hip.
After going back through her pet scans over the past year, we were very disappointed to realize that she had a met in her skull all along and not one doctor had mentioned it to us. This is a reminder to all her participate in a trial that you insist that they read through the whole report with you and that you go over them carefully with your oncologist.
We can all learn a lesson from the Hess family to be vigilant and insistant on any scans you may feel necessary.
Also, Jordanne's side affects had mostly gone away since January, this is probably an indication that the drug is no longer effective. In reviewing her scans since January, it looks like that is when her tumors started growing. She was off of Cediranib for a month in November for her tibia surgery.
I will update the rest of Jordanne's current situation in the personal story section.
I pray that each of the rest of you remaining in this trial will continue to see stability.
Dotty

Hello Dotty!
I am sorry that she is off the trial but i am glad that there are new drugs out there for her to go to now.. Some are stable from them at six months...
http://www.cureasps.org/forum/viewforum.php?f=59
http://www.ncbi.nlm.nih.gov/pubmed/17363602
http://bloodjournal.hematologylibrary.o ... 5.abstract
*sending hugs to you both*

Dotty,

I'm so sorry about Jordanne's progression.But, Amanda is correct, there are drugs out there that are helping. Matt has been stable for about 7 months now on Sutent, and his side effects are much less debilitating than on the cediranib. He is able to work and function pretty normally. I know it won't last forever, but it IS buying him some time.

Our love to you all,

Wendy

Thanks Amanda and Wendy.
Looks like the Dasantanib may be one to try since hers has mainly gone to bones rather than to her organs.

Hi Wendy!
I am so happy to hear he is doing well!!!

wendik wrote:Dotty,

I'm so sorry about Jordanne's progression.But, Amanda is correct, there are drugs out there that are helping. Matt has been stable for about 7 months now on Sutent, and his side effects are much less debilitating than on the cediranib. He is able to work and function pretty normally. I know it won't last forever, but it IS buying him some time.

Our love to you all,

Wendy

Hi Dotty!
From what i have been told weight loss and there is a bleeding precaution.. But, i think that is with all the drugs and it has been doing well for the few i have been told about. I hope with all my heart it works! Will you two be coming to the US?

DottyW wrote:Thanks Amanda and Wendy.
Looks like the Dasantanib may be one to try since hers has mainly gone to bones rather than to her organs.

Amanda,
I'm not sure how to answer your question. Last time I checked, Washington was in the US. I know we're pretty far north but not quite to Canada yet. (No offense to Ivan and Olga). LOL
Jordanne is now going to be a patient of the Seattle Cancer Care Alliance and their Sarcoma team.
I am concerned with more weight loss since her craniotomy. She does not always eat well, especially after having a couple of surgeries in a row. Last April she was at her lowest weight of 108lb, which is pretty thin for 5'10".
Thanks for always having encouraging words for others on this forum. It is appreciated.
God Bless,
Dotty

Cediranib Phase 2 trial at NCI
Ages Eligible for Study-16 Years to 20 Years ?
patient over 20 can't enroll the trial ?

Where did you see that age limitation? On the official clinical trials web-site they say:
"Eligibility
Ages Eligible for Study: 18 Years and older"

here:
http://clinicaltrials.gov/ct2/show/NCT00942877