Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Bonni, I think the trial that did the double blind randomized study of anlotinib was completed. https://clinicaltrials.gov/ct2/show/NCT02388919 The trial I'll be on is phase 3 of anlotinib in ASPS https://clinicaltrials.gov/ct2/show/study/NCT03016819?recrs=ab&cond=alveolar+soft+part+sarcoma&...

Debbie -the trial the Chrisann is part of - our onco tried to get me access to it but they wouldn't accept any more ASPS patients. Hi Bonni, For the anlotinib trial - I wouldn't be receiving a placebo to my knowledge...I'll be receiving the drug. Don't know dose yet either.... First got to see if I'...

Hi Debbie, I believe the drug had good results in China (the drug is from a chinese pharma company)...so they brought the trial as phase 2/3 to US. My onco only got access to the trial just recently about 3 months ago. I'm not sure if he has any other ASPS patients on it, as he doesn't have many ASP...

Hi Olga, thank you for the update. Were the pancreatic mets first detected on abdominal / pelvic CT? Or was it only detectable via abdominal / pelvic MRI? Hoping you get responses soon from the 3 surgical centers for the septum reduction surgery... Also, I'm glad you were able to have your onco pres...

Hi all, Had Y90 embolization done earlier this month on my liver recurrence. Won't know if it's successful until I get my follow up scan done. Trying to sign up for the clinical trial Anlotinib...going to do the prerequisite scans this week and next week (echo, CT chest & abdomen, brain MRI) to ...

Hi Ivan, I am so so sorry to hear this bad news...it breaks my heart. So were your 2 pancreatic lesions already been treated? (I wasn't very clear on this when I read your 1st point.) If you haven't had the surgery yet, I hope you can get the surgery soon. PD1 - would you need to wait to start the t...

i have y90 embolization next week for my liver recurrence. hopefully all goes well.

Glad to hear good/stable results on chest ct.

I don't think biopsy is necessary though, because it could cause seeding and it's most likely asps nodule anyway.

So glad to hear that Tom's feeling good and doing well on treatment.

Thanks Jussi. To my knowledge and per the scan results, there is no leptomeningeal spread. I'm going to have to see if I can get a consult with a cryo doc for the liver recurrence. As of now, I know the interventional radiologist plan of attack for the liver recurrence is y 90. He was the one that o...

Dura: The outermost, toughest, and most fibrous of the three membranes (meninges) covering the brain and the spinal cord. Dura is short for dura mater (from the Latin for hard mother). Also called the pachymeninx (singular) or pachymeniges (plural). Epidural means outside the dura.

With srs control rate of mets smaller than 6 mm is practically 100 percent. So even though this met is bigger than ones treated before it is still very small. I am more concerned about location of this brain met. Is it in meninges? Is there leptomeningeal spread? Hi Jussi, I'm not sure exactly wher...

Thanks Olga. My previously treated brain mets were 1mm or less than one mm in size, so they were very small. This new one is much bigger at 4x6mm. It's on the lining covering the brain, so I don't know if that makes any kind of difference or whether those spread easier, but yea. I assume my radonc w...

Update: My Brain MRI scan done on Monday showed a new lesion 4x6mm. (see below scan result). My two small other lesions that were treated by SRS are stable. Per scan: "New 4 x 6 mm enhancing dural based lesion along the right parietal lobe with associated vasogenic edema. No hydrocephalus or ma...

Dear Jen, To answer your questions with more information and details please read the information in the "Brittany from Washington" topic in this Personal Updates section beginning on page 1 of her topic with my April 27, 2008 post. Due to inexcusable radiologist negligence, Brittany's lar...