Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thanks for the advice everyone. I am also skeptical about the lung biopsy, but my mom is already pretty stressed out and it seems questioning her Oncologist is just adding more stress for her. Her doctor is Dr. Chmielowski at UCLA who specializes in sarcoma. The drug he suggested is Votrient. I have...

Hi guys, My mom's uterus biopsy came back negative for malignancies thankfully. Unfortunately she met with her oncologist to review her recent lung scan and the nodules that were present before have grown, and there are new nodules in both lungs. She doesn't know how many but it sounds like quite a ...

Yes, Olga that's correct. They did not remove the mass from her hip bone, because the biopsy was negative for malignancies. I do believe the biopsy Olga described is the one my mom is having next week. Her gynecologist described it to be a pretty routine procedure that they perform on women of her a...

I believe it was a little bit less than a centimeter. Not sure the exact type of bone biopsy, but it was a pretty big procedure where she was put under sedation. It was an MRI that picked up the mass, which wasn't present in the previous scan of her leg so of course her doctors wanted to biopsy it.

Hi everyone, Happy thanksgiving! Hope all the US members had a lovely holiday with family and friends. Sorry I haven't posted an update for quite a while. We've just been busy, trying to think about this disease as little as possible to be honest. I'm happy to report that my mom is doing really well...

& here's the link to the researchers' article

http://www.cell.com/cancer-cell/pdf/S15 ... 0407-3.pdf

I wanted to share the below article describing researchers' new discovery of the role lactate plays in a ASPS metabolism. I found it to be pretty interesting for a two reasons: 1. I've read a lot about anti-cancer dietary restrictions limiting glucose as it is believed that many cancer types are fue...

Hi Debbie- thanks for the well wishes. I hope you and your family had a wonderful holiday and a very happy new year. Quick update: After meeting with her oncologist (Dr. Chmielowski at UCLA) my mom decided to go forward with the radiation treatment. She's on her 3rd week of 7 (35 total treatments). ...

A quick update - my mom received news that the margins were clear! Great news. She will be meeting with an oncologist and radiation oncologist in the coming weeks to discuss radiation treatment.

Hi Ivan, she had the rectus femorus removed.

Hi there, My mom is feeling better today, I think the removal just disturbed the wound as Olga said. Thank you for all your thoughtful posts. We monitored and measured the fluids from the drain, and it has gotten down to 20ml which was low enough for the doctor to remove it. He said the body is more...

Thanks Olga. The doc said that it's normal for patients to experience a slightly fever during recovery... Maybe he was preparing us for more pain in the healing process to come. :/

Hi Debbie, The doctor said he was pleased with the incision and thought it was healing nicely. She's supposed to rest for the next week and keep walking to a minimum. No exercising for 6 weeks at least. She has the shots for another week. She has very strong pain meds, we were trying to cut down the...

Hi all, We met with the surgeon today and he explained that he will be referring my mom to an oncologist at UCLA who will order her next round of scans. We will get the pathology report Thursday evening to find out if the margins are clear. We will also discuss radiation therapy with the oncologist....

Thanks for the advice Bonni. We will try and request a copy of the cd of the pet-ct and MRI. Olga, thank you so much for the explanation. I'm thankful that this initial scan showed no spread (as it would have to be a larger tumor to show up apaprently!) and am keeping positive that once she has the ...