Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Just wanted to let folks know that we started on Dasatinib a couple a weeks ago at Stanford Cancer Center. We had a really hard time and progression once we were taken off of the Cedinadrib, all was ok for a about 5 days then it seemed my Liver exploded, expanding and putting preasure on my internal organs causing a great deal of pain, fortunately we still qualified for the Dasatinib trial and have felt better everyday since begining on the drug, side effects have been minimal but will report in a couple of weeks after my first exams with Dr. Ganjee at Stanford, first restaging in a month and half.
Thanks Folks
Eric

Eric, I am sorry to hear about the rebound liver met growth after the discontinuation of the cediranib. Can you add more info on the situation - was it only 5 days off the cediranib? Did you feel the progression or it was also confirmed by the scanning - MRI, CT? - and if you had the scan, then how big the progression was...
And about the Dasatinib - is it a clinical trial for a drug alone or a combination with something? Is it a clinical trial Phase 1 or 2?

Dear Eric,
Thank you for your thoughtful update and the shared information. I am so sorry that you experienced such rapid and aggressive rebound causing severe abdominal pain following your discontinuation of Cediranib, but am very grateful that you have now begun the promising Dasatanib Trial and seem to be having a positive response to the medication based on the reduction of your pain symptoms. As you probably know, there is evidence that if resistance is developed to one type of tyrosine kinase inhibitor (TKI) such as Cediranib, that switching to another type of TKI such as Dasatanib, Sunitinib (Sutent), Sorafenib (Nexavar), Pazaponib, or Axitinib can help re-establish the disease stability that was achieved on the initial TKI. Hopefully this will be the case for you, and everyone else who has been taken off of the Cediranib Trial due to progression. There is another ASPS patient who was never on Cediranib, but who has been on a Dasatanib Trial in southern California for the past couple of months, who has thankfully shown a positive response to the Dasatanib with stabilization of her disease and shrinkage of her lung mets. She does not want to personally participate on this Board, but has given me permission to anonymously share her Dasatanib experience and results which I will do on her behalf in this topic section when she writes to update me. If you would like to contact her to discuss her Dasatanib treatment with her personally, I will be glad to provide her contact information to you if you write me at my e-mail address which is BonniHess@aol.com. In the meantime, I Hope that you continue to feel better, to have minimal side effects from the medication, and to have a very positive and successful response to the Dasatanib. Please take care Eric, know that my most caring thoughts and very best wishes are with you, and keep in touch as you are able.
With deepest caring, healing wishes, and continued Hope,
Bonni

Hello Eric,
When you have time can you please post how you are doing so i can tell J I hope that you are still feeling better and that your silence the last few months is because you have just needed space ... Let me know in a post or mail please ... ty

Dear ASPS Community Friends,
Heartbreakingly, Eric's Dasatanib treatment (I am unsure exactly how long he was on it) was unsuccessful in stabilizing the progression of his disease and shrinking/destroying his multiple tumors. According to a newspaper report and a Facebook update, Eric devastatingly lost his courageous seven year ASPS battle on August 24th, 2011 after discontinuing the Dasatanib and then going to Cologne, Germany in mid July to receive an alternative therapy known as the Gorter Model which was tragically also unsuccessful. Eric's rapidly progressing disease apparently prevented him from posting any further Board updates on the length and results of his Dasatanib treatment, so all that I personally know at this time is that it sadly did not prevent his disease from progressing. My deepest sympathy and greatest shared sorrow are with Eric's dear family and his many friends as I grieve the tragic loss of a wonderful young man who I came to know through his participation and our communication on this Board.
I continue to hold very tight to Hope that the Dasatanib will be successful for the other ASPS patients who are currently being treated with it including Sree and "J", and that they and anyone else who is being treated with it will keep the Board updated on their Dasatanib treatment experience and results.
In loving memory of Eric, and with deepest sorrow for his devastating loss,
Bonni