Friday, July 13, 2007

Sea Squirt
Sarcoma Internet Buzz

Here is a complete break from my usual blogging habits, but it hit a cord with me so you'll just have to bear with. As most of you know, I had myxoid liposarcoma a rare variety of a rare sarcoma in an even rarer spot- my ankle. I don't know what the total numbers are, but they aren't big. While I've never really sought to be average or common, there are some real downsides to having a rare disease. Hence journeying to New York for treatment. Over the past few weeks the internet has been buzzing about the NIH specifically cutting research funding for sarcomas, because well they are rare so impact per effort/ money is less. I don't know the details about all of this, so I haven't weighed in on it yet becuase there is always so much more to the story then what is reported. However, I have found the discussions interesting as I work in a field where we often need to look for "orphan drug" development becuase what I do in my doctor world is also rare especially in its most severe forms. See like I said, I never aimed to be common.

Now, this is even more interesting, it seems that there is a new thing, causing some buzz in the internet world which is that they have discovered, a substance from a Sea Squirt that acts as chemotherapy specifically against myxoid liposarcoma. This is good news for liposarcoma patients and maybe even for sarcoma patients in general who have metastatic disease, which thank God I don't. As it highlights that all soft tissue sarcomas are different and should be treated as such. Even more it highlights the careful balance between the environment and health and our need to be good stewards to the world around us, above ground, under the sea, everywhere. It reminds me of that movie from the early 90s with Sean Connery, Medicine Man. As I recall the plot, Sean Connery has found an extract from the flowers that appears to cure cancer, but they can't isolate it. They fight against time as developers are coming to destroy that part of the rain forest and when they finally find what they are looking for it highlights the need to look at the careful balance in the environment. Sorry I won't give away the ending in case you want to order it on netflix. None the less this sea squirt is a seemingly innocuous sea animal that starts out life mobile and then morphs into somthing like a sea sponge by the time it reaches adulthood.
The above photo is an adult spongy type sea squirt and to the left is the embryo sea squirt with a tiny brain and spinal cord so it can move.

Like I said- different then my usual posts but hopefully, thought provoking.


Doctor David said...

Hi Lisa,
Thanks for commenting on my post about this same drug. I have only 1 patient with myxoid liposarcoma right now, and she's doing great, too. But it's nice to know there's something new out there in case she does end up needing it. I always talk to my patients about how many of our drugs come from nature... it's cool to see another new example.

David Loeb

Anonymous said...

Hello Lisa,

I am so sorry to hear your story, I was searching for Myxoid Liposarcoma and came across this blog. I just found out that my Mum also have Myxoid sarcoma of the foot. Since she is backhome, I am communicating with the resident students and lab technician at the hospital she is in and I am confused by the stuff I am finding out from them. They say it is localized and so they haven't done any grading or staging (even though this is second tumor in last few months). Is it normal?? She is scheduled for surgery but because of backlog they have postpone it.. wouldn't it be bad if they postpone, especially when it seems to be aggressive.
I am so sorry if I am bothering you a lot, but I just feel hopeless and I don't know where to go or whom to ask..Please any suggestion would be greatly appreciated
Thanks a lot in advance