Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear all, The latest news from our side is not overly encouraging. Elisa had to undergo an emergency operation two weeks ago. A mass had grown very quickly in the lower pelvic region and risked blocking the urethra. The surgery went well, and although Elisa only recovered quite slowly, she is much b...

Many thanks, Olga, that makes sense.

Johannes

Hi, I have just come across this recent article about the presence of HCMV in ASPS. I have not yet found the full article, but the abstract is below. Perhaps this will lead to another treatment option!? Best, Johannes Appl Immunohistochem Mol Morphol. 2016 Mar 17. [Epub ahead of print] Human Cytomeg...

Johannes - I am following your case, I started reading as my 9yr old daughter will be starting Cerdinib trial next week at NIH. Thanks so much for sharing your journey - it has helped me to read everything you have tried. It seems no ASPS case is the same, but a person can learn alot reading about ...

Hi again Debbie, The primary pathology report does not seem to say anything about mitotic rates. What it does say is that "rare mitoses are seen". In case this helps, the report also says that "no necrosis is observed". I am not too sure about the correlation between MSI status a...

Hi Debbie, Thanks for this. To clarify: they used an archived tissue from the lung biopsy that was done in 2009 and on which the diagnosis was based. This was only for MSI, not for PD-1 (or PD-L1) expression. We have a copy of the report, but I can't find it right now - sorry! What I remember is tha...

I hope everyone had a wonderful holiday! I am sorry that I haven't updated my post in a while. I just wanted to post a quick update to let everyone know that my 6 month scans in early December showed that my target tumors had shrunk another 14% for a total shrinkage of 56% since I started the study...

Dear Olga, We consulted several specialists, including sarcoma surgeons, both before and after the Cediranib treatment. As I said, the last consultation was only a few weeks ago. Right after the initial good response in 2010, i.e. after a few months on Cediranib, would probably have been the best mo...

Dear Olga, Bonni and Daniel, Many thanks for your quick and thoughtful responses. We have consulted several specialists (oncologists, surgeons and radio-oncologists) over the years, in Canada, the US, Europe and Australia (where we lived last year). None of them recommended resecting the primary in ...

Since Elisa stopped taking Pazopanib, the next post is in the personal updates forum:
http://www.cureasps.org/forum/viewtopic.php?f=4&t=884

Dear all, It has been a while since I last contributed with a post, so here is a bit of news. Elisa has been doing alright, overall. She stayed on Pazopanib until a few months ago, and stopped because her lung mets have been growing slowly but steadily. She also has terrible episodes every few weeks...

Dear all, There have been a few ups and downs since I last wrote about Elisa, although, overall, things are not too bad. Elisa took a break from Pazopanib in July and August. After some of the side effects had become worse, her oncologist told her that she could give her body a break. During that pe...

Hi Olga, Thanks for following up. I said stable because the report indicated that one lesion had grown by 1mm, another decreased in size by 1mm, etc. It is a very detailed report, and we also compared the numbers to previous reports (not only the last one). Of course radiosurgery (as they call it) i...

Dear Bonnie, My impression is that Pazopanib alone cannot be very effective in the long run. Unfortunately, there is very little data available with respect to combinations (and there are apparently not many studies going on), but are a few cases where resistance to Pazopanib could be overcome by ad...

Dear all, A quick update: Elisa is still taking Pazopanib, with at times more severe side effects than before. But the very good news is that the CT scan of the chest/abdomen/pelvis that was done last week showed overall stability and shrinkage of the one lesion that was treated with stereotactic ra...