Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Wow! I can't believe it's been a year since I last posted an update on Jordanne. Where do I start? Shortly after that post Jordanne had severe pain in her back from tumors in her pelvis and lower back. We chose to do radiation to the pelvis in late December. The radiation did relieve the pain from t...

Mario,
That's great news. Sounds like a God thing to me.
Dotty

Thanks so much for this valuable information. Jordanne also has a licence for medical marijuana which her radiologist prescribed. Even in states that have legalized medical marijuana you may not be able to get a prescription from a doctor that prescribes narcotics because they have to have a federal...

Sherree, It makes me very sad to hear this. I don't know what the medical community is like in Australia but I know that there are Drs here in the US that would confidently do the surgery. Dr. Ernest Conrad, here in Seattle, contact Seattle Cancer Care Alliance and Dr. Martin Malawer in Bethesda MD ...

Sherree, I'm also very sorry to hear of Mick's disease progression. My daughter, Jordanne, just had a tumor in her femur removed at the beginning of November. She has had disease progression in her bone mets, including the skull, since being removed from the Cediranib trial at NIH in Maryland. She i...

Hello Larry, I'm sorry to hear that you have been diagnosed with ASPS, especially at your age. One of the fortunate things about being diagnosed at this current time is all of the research being done on systemic treatments. I think that you have taken the best route so far and are wise to take time ...

Guilty here! We've been pretty discouraged and busy trying to chase Jordanne's tumors as she has had quite a bit of progression since gong off of Cediranib. I agree, Bonni, that Cediranib has shown shrinkage and I believe Jordanne did not have any new mets for quite some time. Unfortunately, when sh...

Dear Mania, Thank you for bravely sharing the news of Paula's passing with the forum. We all feel like we know each other through the shared struggles of this evil disease. How blessed Paula was to have such a loving siste!. I pray that God will wrap His loving arms around you and your family and fr...

Amanda,
I'm sorry thatyou have to go through the scanxiety that all of you strong, courageous people do with this disease. I'm sorry that you are dealing with pain in your leg as well as other areas. I will be holding you up in prayer that all will come out with no new disease.
Blessings,
Dotty

Bonni, Jordanne and I both send our love and excitement about Brittany's latest scans. It is just wonderful to hear that she continues to do so well on this drug. I echo Amanda's sentiments that maybe this will have killed off all trace of this disease in her body. I believe strongly in miraculous h...

Amanda, I'm not sure how to answer your question. Last time I checked, Washington was in the US. I know we're pretty far north but not quite to Canada yet. (No offense to Ivan and Olga). LOL Jordanne is now going to be a patient of the Seattle Cancer Care Alliance and their Sarcoma team. I am concer...

Annika, Did you have the chalky contrast? They recently started using a new contrast at NIH which was more like just drinking water. I don't know what the difference is but it's something worth looking into. I certainly hope that you are cancer free. But with this disease, it seems that it can be ju...

Ivan, Yes, Jordanne is almost always positive and very active. The tumor was just in the skull. It did not invade the outer dura or the brain. They removed a smaller one next to it at the same time. She also has 3-4 other ones in the skull but in different locations. She has had a few headaches, but...

Mint, One thing I can personally attest to in the case of Brittany, and my daughter Jordanne, is that they are fighters. Keep a positive and fighting spirit. Don't let the new mets get you down for more than a couple of days and keep looking for new treatments. This forum as well as the ASPS faceboo...

Thanks Amanda and Wendy.
Looks like the Dasantanib may be one to try since hers has mainly gone to bones rather than to her organs.