Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello
I will be posting for a dear friend that is also on this trial and has been for a few months...
she is seeing Charles Forscher, MD He is also my Onc

http://www.cedars-sinai.edu/Bios---Phys ... er-MD.aspx

Untill i speak in deapth with her about things she would like to share i will tell you that she does have stage 4 ASPS and her lung have a good amount of tumors that were progressing untill she started this drug. The tumors in one or more cases were over 1.5 cm

I am deepy happy to post that she is stable!!!

She has had side effects yet she for the most part now is feeling well and as pretty as ever inside and out and living life!

Things i remember as side effects are :

Diarrhea
Coughing
loss of weight *I need to ask her why spec*

I will post back more information after i talk to her

Hey Amanda - any updates from J?

Hello everyone
I have great news! J has been stable on this drug now for over six months! There is as with many of thse drugs risks and one is fluid in the lungs. She had this and they took care of it very quickly with meds and she fekt better! When they looked closer they also found two tumors that were blocking her air way an treated then with
http://www.cedars-sinai.edu/Patients/Pr ... ients.aspx
and she is doing great!!! She will be healing up when they are done and going back on this drug.
This drug and its less toxic effects an the stability that i am hearing about fronm people make this new drug now kinda top pick if i need to have any drug.
I hope that the information that we are sharing on J helps others an though she doesnt feel comfy posting this she is happy she wants everyone to know so she can help

Excellent! Do you know if she's had stability, or also some shrinkage?

Hi Ivan
So far she has said he told her stable.. But, they also when they found fluid in her lung from the drug a tumor that they had never seen before. It was in the tube... It was kinda bit though so i dont think it was new

I would like ot hear back about Sree and Eric... Bonnie pointed out that they were also on this trial and that they were very quiet. We are hoping they reply soon with any news! Because they both came off another trial i am concerned when are friends are silent i am praying they are just having a great summer and thats why they are not posting... But, yes J is stable an the tumor they found they killed She wil be back in the drug again very soon

Ivan wrote:Excellent! Do you know if she's had stability, or also some shrinkage?

Dear ASPS Community Friends,
For those of you who have been following "J's" Dasatanib experience through Amanda's updates and possibly considering Dasatanib treatment for yourself, I thought that it would be very important for you to know the following information which Amanda posted in the Personal Updates section in a response to Sree's wife Arch in case you missed that recent post:

"Jem that was also on the Dec trial is now also not stable and looking for another option."

Sadly, this means that all three of the patients on this thread who were participating in a Dastanib Trial unfortunately had failed responses to the drug including Eric (who tragically subsequently lost his courageous battle), Sree, and now "J". If there are any other patients on this Discussion Board who have previously taken/or are currently taking Dasatanib, it would be deeply appreciated if you would share your Dastanib treatment experience and results so that there is more anecdotal experience information available to everyone on which to try to draw conclusions about the drug's potential effectiveness/success/failure and to make critical treatment decisions.
Shared anecdotal treatment experience AND final results information remains one of our most powerful weapons in fighting this extremely rare disease.
My special thoughts and very best wishes are with "J" and Sree in finding an effective new treatment which will be very successful in stabilizing their disease and shrinking their tumors.
With special caring thoughts and continued Hope,
Bonni

I would like to add to Bonni's post, Dasatinib did keep Sree's tumors stable for a while(6 months) and then he developed resistance to it. Dasatinib had the mildest side effects of all the TKIs he has been on so far(Cediranib,Sutent, Pazopanib). Just thought it might be useful to somebody here..

Dear Arch,
Thank you for the important additional information and insights. Certainly the stabilization of disease and tumor growth for any amount of time is a victory in fighting this very challenging disease.
I was not aware that Sree had also received Pazopanib since I don't think that you had posted that information on the Board?, but if not it would be deeply appreciated if at some point, if and when your time and situation allow, you could submit a brief post about his Pazopanib treatment experience and results in a Pazopanib thread.
I Hope that Sree's concerning weight loss has been stabilized and that he is feeling better. I will be holding him and you very close in my heart and most caring thoughts and anxiously awaiting an update on his next treatment plan. Please give him my very best wishes,take care, and keep in touch as you are able.
With deepest gratitude for your important shared information, and with special caring, healing wishes for Sree, and continued Hope,
Bonni