Cure Alveolar Soft Part Sarcoma International (iCureASPS)

It is with great sadness that I share the passing of Michelle (MJ) - She passed July 6, 2016 after a 7 year battle with ASPS. I want to thank all those who participate in this forum, it was very valuable to me through Michelle's journey, and my propensity to find out every detail possible to help he...

Well its been a while since an update for MJ She is still taking Cometriq and stable as of her last scan in November after some growth in August. As usual, the disease is very unpredictable. We are getting ready to try a new drug, Crizotinib or Xalkori. Has anyone heard of this drug or any experienc...

Hello Just thought I would provide an update. MJ has continued to take a reduced dose of Cometriq, which started Fall 2013. Scans recently revealed some growth in the lungs. Its less than 20 percent, but still concerning given the continued growth over the past year and since the beginning of the me...

D.ap The adrenal met has been showing up on the CT scan for a while (more than a year ago). It continues to increase in size, although at a pretty slow rate. I have found that some mets can increase, while others are decreasing. I had previously been told that all the mets would go the same way if a...

Hello Its been a while since I have posted. A brief history, MJ was diagnosed in July 2009, and has been on various treatments, mostly TKIs, off and on since diagnosis. Her primary is in her thigh, with multiple lung mets, and an adrenal met. MJ started taking Cometriq in the fall 2013, with a dose ...

Hello Its been some time since I last reported on MJ. She was diagnosed in 2009, and been through a number of treatments, including Cediranib at NIH, Sutent, Pazopanib, among other clinical trials. After nearly one and one-half years of stability on Pazopanib, she has had disease progression. She wa...

Hello Its been a long while since I have updated progress on MJ. She stopped the Cediranib trial in June 2010 after side effects forced her off the drug. She did have positive response to the drug for nine months. She recovered through August 2010, and then began Sutent. She went through several cyc...

Hi Everyone We had some bad news and good news today - MJ has been taken off the Cediranib trial at NCI. The weight loss was the primary reason. It has just become too much for her to stay on the trial and remain within the guidelines of the protocol. The good news is that a new trial will be starti...

Bonni All other side effects have normalized, including liver enzymes. It took a few weeks for the levels to come down, about four actually, but they have fallen within the normal range and have not increased. I don't know about resection yet of the primary, but its something we will consider probab...

Hello Everyone MJ finished up two months at a reduced dosage of 15mg with scans this week. To our delight, she had positive response even at the reduced dosage, with all tumors shrinking about 10 percent over the past two months - no new growth. Some side effects, including weight loss, continue to ...

Just a quick update on MJ and the progress within the trial. She has resumed the medication after a 30 day break due to side effects already noted. She was rescanned and it was found that the tumors had increased in size 10-15 percent from the most recent scan on 12/22. So 30 days without the drug a...

I think I can provide some encouraging news here. My wife MJ was the first to start the trial at NIH in September - She has been on HOLD with the medication now for three weeks. This is a result of side effects including increased liver enzymes and weight loss. Recently, we received news that levels...

Greetings again MJ underwent the latest scans recently, and I am happy to report additional shrinkage in the size of the tumors. In total, the size reduction is near 30 percent thus far. However, the doctors have placed the drug on hold for her due to some complications with side effects, namely wei...

Olga Some comments made while we have been at NIH for the visits lead me to believe that there are at least 4 or more patients in the trial - I think its fairly fluid though, as comments made by the nurses seem to indicate that complications have taken some off/on again several times. I think MJ rep...

Arch When MJ first started the trial, the impact was almost immediate - she had significant pain at the site of the primary tumor in her leg. She was taking some heavy pain medication to counter the pain, and it became unbearable for her to deal with at the time. This was only for about two weeks, w...