Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Debbie, Thanks so much for thinking about us. I don't often check the forums anymore because it is just too painful. We are still grieving deeply, missing our boy. No one knows how this affects you until you go through it. It is the club that no one wants to belong to. I continue to be grateful for ...

June was a particularly terrible month for ASPS patients and their loved ones. My darling son and best friend Matt passed away on June 8, 2013. His pain and suffering is blessedly over.... but I miss him SO much.


Wendy

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 i...

Hi Bonni, Yes, the new PET was measured in mm's, BUT the doctor did a conversion for us, and told us the results in cm. So, YES, his tumors have grown 2 cm. and 1 cm. He had the CT scans of the abd, pelvis and brain in December, and Dr.Gutierrez also used those as a tool for comparison. I wrote you ...

Hi Olga, It's not really so much a second opinion as it is a consultation with a specialist. Dr. Gutierrez has colleagues there, and we'd like to know about the research and clinical trials there. The newest PET does measure in mm. The largest mass is right mid-lung, measuring 105x141x91mm. The left...

Hi everyone, We just returned from Ft. Lauderdale where we received the results of Matt's PET. After 2 cycles of Sutent it appears that his 2 major Tumors (lung and sacrum) have both grown. The radiologists could not do a proper comparison because they could not open the disc from NIH (how ridiculou...

That's FANTASTIC!!!!! I'm SO happy for you all!

Not surprised that Mario is off the trial. Dr. Kummar is looking for that "30%" (or close to that) reduction at least on one of the scans, and if she doesn't see a substantial reduction at some point then it doesn't look like the drug is doing its job. Unfortunately, many patients don't ge...

Hey everyone, Yes, it's been awhile since I posted, but I will update you all as best I can. Matt started treatment with Sutent around the first week of December. This was after about a month of no treatment. We aren't sure how that affected him because he had had his last PET and CT at NIH around N...

Hey Mario, Not surprised to hear about your slight progression...hope it stablizes and you remain on the ced for a long time. Matt was also considering the ARQ197 trial, we were under the impression it was to be combined with Cediranib. Matt has started his Sutent treatment, so I'll let you know how...

Arch, Matt got the approval for Sutent today from United Healthcare. It seems the insurance companies ARE viewing this as a viable option. (Thank goodness) We don't yet know what his co-pay will be, but there are co-pay assistance organizations out there to help. I will let you all know what his cop...

Oh, by the way, my niece is a pharmacist. She looked up the retail price of Sutent....Its approx. $11,000 per cycle.

Dr. Spinoza at NIH told Matt that the protocol allows for 20% growth.....I don't get whats up with Dr. Kummar. I think she's so concerned with her numbers that she's losing sight that this drug is keeping MANY patients basically stable. Another reason to be leery of trials.Those in charge seem to fo...

Fantastic News!!!! We're so happy for you!

Wendy and Matt

Oh, forgot to say that that Bx, about a year ago, was long before he entered cediranib therapy. It was an incisional bx, and it was the one that led to his diagnosis.