Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Has anyone taken this drug? I have requested to enter this clinical trial.

Dear Charity,

Yondelis, Trabectedin or ET-743 are names for the same drug. It is a marine derived anti-tumor agent, which is now produced synthetically. It binds DNA and interferes with DNA transcription and repair, leads to the inhibition of cell division.
I remember that in the past, few ASPS patients reported the use of ET-743 alone or in combination with other chemotherapies. I have no idea of the dose that was used. If ASPS patients used that in a clinical trial you may be able to find that information. I am not sure, but it is possible that few of those ASPS patients were treated at The Sloan Kettering and at The Fox Chase.

Best Wishes,
Yossi

Hi Charity,

Here is some more info on ET-743 from Dr. Bob Maki, the ASPS expert oncologist at Memorial Sloan-Kettering Cancer Center, and this is what he said (via Dr. Ladanyi):

"The best results I have heard about are with trabectedin (ET-743), with several responses in Europe....but since I don't have the drug here it is 3rd hand information! The drug is available on a kind of "expanded acccess" / compassionate use treatment plan - http://clinicaltrials.gov/ct/show/NCT00210665?order=3"

I don't know the details about the response, but it is something I am looking into. One of my contacts is the Vice President, Clinical Science & Study Operations, Clinical Pharmacology & Discovery Medicine at
GlaxoSmithKline and they are researching this.

I personally have ASPS since 1995, and had several surgeries and was a GVAX patient at DFCI.

According to Dr. Jeffery Morgan (Jeffrey_Morgan@dfci.harvard.edu), in about 2 months, DFCI will open a trial using this drug:

Sunitinib http://clinicaltrials.gov/ct/show/NCT00 ... 33?order=3

In the meantime, I am using high dose IV Vitamin C and Vitamin K3 when it doesn't interfere with any therapy.
http://www.sciencenews.org/articles/20010616/bob13.asp
http://www.herbological.com/herblog/?cat=8

David Liu
Raleigh, NC
(818) 795-9174

Hi David,

I was able to request participation in the Yondelis clinical trial. It is being held here in Ottawa, Canada. My doc gave me some consent forms to look over and the side effects are a combination of all the ones I have experienced through radiation. It is also being used with 20mg of dexamethasone. Nevertheless I will receive my latest scan reults tomorrow. If I have any new brain activity they won't allow me in the trial. Charity

Has anyone participated in this trial yet? I am about 2 weeks away from starting. I have had an increase in lung mets I am only interested in 1or 2 cycles due to the side effects to the liver and kidneys that I have read about. The success of this drug seem to be mixed. I read 1800 patients worldwide have tried this trial. I read one patient works fulltime while on the trial. Any other developments to note?
Charity

Here is some more info:

http://news.bbc.co.uk/2/hi/health/6221740.stm

David

Charity couldn't post by some mystical reason so I do it for her:

I have completed 3 cycles of Yondelis and I can say the actual drug is not so bad when deal with nausea and fatigue. It leaves me with enough energy to work part time. The main problem is the 20mg of dexamethasone I have to take before each infusion. My latest CT scan of the chest abdomen and pelvis shows no new growth in the lungs and slight increase of the peritoneal mets. My blood tests show normal levels of white and red cells however very high levels of creatine phosphokinase. I will see what my next blood tests say in order to decide whether to go on or rest for a cycle and see if the levels drop.

Charity

Dear Charity,
Thank you for making the extra effort to update the Web site by contacting Olga to submit your entry for you. I am so glad to hear that you are tolerating the Yondelis treatment well and that you have been able to continue with your part time work. You and your courageous perseverance throughout your challenging battle are truly an inspiration to everyone. I am so Hopeful that the Yondelis will be successful in systemically shrinking and destroying all of your mets. Were any brain MRI's and bone scans done in addition to your recent abdominal, chest, and pelvic CT's to try to determine the effect of the Yondelis on your brain and lumbar mets? Do you know if Yondelis is able to cross the blood brain barriar? Is your retinal tumor now gone, and has your vision returned to normal? When are your next scans scheduled? I will be anxiously awaiting your next update, and continuing to hold you very close in my heart and my most caring thoughts. Please take care dear Charity and keep in touch with the Web site as you are able.
With special caring and continued hope,
Bonni

Just an update that I completed 4 cycles of the clinical trial for Yondelis in December. Unfortunately after 2 CT scans there has shown an increase in the number of mets in my lungs, stomach and chest wall.Although this sounds bad, I really dont feel any different so I will just continue to soldier on like everyone else.The only lingering side effect I continue to have is fatigue. I wish everyone continued strength and better health in 2008. Charity

Charity--

I am so sorry to hear of your disease progression. I'm glad you going to continue to be a trooper though! That's great. Are you going to continue the Yondelis trial or try something else? What are you going to try next?

I hope all is well.

Sincerely,
Kim