Leiomyosarcoma (LMS) has been a part of my life since March of 2008. Anytime one gets a diagnosis of cancer, the air just goes out of the room. One scrambles for reliable treatments and hope. With well researched cancers, that can happen. With LMS, not so much. This is a rare cancer, an “orphan” and very little is known about it. My cancer was in my retroperitoneum originally. Only about 10% of these tumors respond to traditional chemotherapy. Once the cancer has metastasized, the prognosis is even more grim. I have often said to people that you keep hacking it out until either it gives up or you do.
This is the very first time I have asked for donations to this cause. And the donations are earmarked to specifically go to research for the CD47 trial slated for mid-2014. Why CD47 research? Quite simply because this is the single most encouraging research I have read about in my “life” as an LMSer. And, it goes way beyond just LMS – there are applications for many other cancers. And, I take more than a little pride in the fact that Dr. Matt van de Rijn’s research into the CD47connection to LMS is the result of a collaboration, not only with other fine scientists, but with LMS patients from all over the world on my LM_Sarcoma listserv on ACOR. We donated tissue so Dr. Matt would have something to work with. It is the first “grassroots” cancer research effort I have ever heard of.
I wrote a story about this research and encourage you to read it – not just to satisfy my vanity – but because it informs in a down-to-earth and humorous way. Yes, I make fun of cancer. It is available at
We are in the process of our second tissue drive and have really stepped up our fund-raising efforts. Hence, this fund in my name. Every penny goes to the research. LMSdr is staffed by volunteers so you are not paying anyone’s bloated salary. Every dollar you donate for CD47 is matched by LMSdr.org. And, while we speak of “matching funds”, please inquire of your employer or church to see if they have a program that would also match your donation.
If you are here, I assume you are, at least, contemplating a donation. Thank you for that on behalf of all of us! Every donation helps!
If you would like to make a donation to LMSdr in honor of Susan, please click here . (When donating through PayPal, you can use the Designation Box to specify a Fund.)