Cure Alveolar Soft Part Sarcoma International (iCureASPS)

For those of you who are looking to use Cediranib. You can join at the Dana Farber in Boston: Please e-mail to one of the three Contacts: Dana-Farber Cancer Institute: Melissa Hohos: mhohos@partners.org Dana-Farber Cancer Institute: Childrens Hospital Pediatric Clinical Translation Investigation Pro...

Dear Bonni, Amanda, Olga The information that I posted is the current plan for Cediranib in the US. I agree that it does not give an immediate answer for our ASPS community in the rest of the world. Also, it is my concern that if the comparative study with Sunitinib will not be significant enough, t...

Hello everyone! Please read my Feb 4 2012 post on the main page of our website - Update on Cediranib development for Alveolar Soft Part Sarcoma At least for the near future, Cediranib is not disappearing. AstraZeneca, the developer of Cediranib, has decided to transfer the development of Cediranib t...

Dear Eva,

We went a long way together, but we still did not find the cure we want for our children. I knew Adam and you, the loving family he had. I am so sad. My Best wishes for you, and your family. You all including Adam really tried everything possible.

With Love,
Yossi

Dear Bonni, I am with you. I wish, for the sake of our childrens that one phase 1 clinical trial and we had a cure. The main goal of any phase I clinical trial is to assess the safety and tolerability of a drug / therapy. If a benefit for the patient is already seen in that stage it is great. But fi...

ARQ 197 is an oral drug in the family of targeted therapies (c-met inhibitor). The clinical trial for ASPS was opened in November 2007. If you are a patient on that clinical trial, please use this forum to report your personal experience with ARQ 197. If you are an ASPS looking for more information ...

We have no idea if either Nexavar (Sorafenib) or Sutent (Sunitinib) are effective in treating ASPS. In this “Forum” you read that we know one case of response when Nexavar was given in combination with Avastin. You are right, both Nexavar (Sorafenib) and Sutent (Sunitinib) are pretty similar in thei...

Hello Scott,

I am glad to read this report. Did any other treatment follow or will follow the GVAX clinical trial: injections of gamma interferon and GMCSF or treatment with anti-CTLA4 antibodies?

Thanks,
Yossi

Dear 'F', One of our ASPS members was treated with Avastin for 4 months in 2004. Based on his relative reports, the Avastin was very effective for the first 30 days. The first CT scan at the end of the first month showed dramatic shrinkage in existing lung mets. The 2nd scan after two months of trea...

Dear Ellen, My Best Wishes to Amelia. Thank you very much for writing. No one of us chose this ASPS journey, but now when we are there we will walk this way together and find the cure for our children. I know that many other ASPS patients, their family and friends are reading us and I am very glad t...

Dear Cricri,

Welcome to iCureASPS. As Olga says, do not worry regarding your English. However, in my home we speak few languages, among them is French. If you wish to speak in French, please e-mail me and we can set up a phone conversation. My e-mail is: landesmany@yahoo.com.

Best Wishes,
Yossi

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 pati...

Dear Elaine,

Best Wishes to Sean.
I wonder if your osteopathic manipulative medicine specialist recommends any type of physical activity as yoga, pilates or other to complement his body manipulations?

Yossi

Dear Olga,
Very good. Very encouraging to know that the laser surgery is a good treatment option to choose.
If all looks so good, why are you on a 4 months CT scan schedule? I always tend to think that less exposure to frequent radiation is better.
Please give my Best Wishes to Ivan.
Yossi

Dear Bonnie, I am glad to read your reports. The improvement in Ashley's condition is another example how important is it to be active, to take the initiative and try new type of therapies. I have two questions to you: 1. How do the doctors determine 90% death of the primary? Was biopsy ever taken? ...