Hi,

This is the 1st time I have seen this web site and it is awesome!  There is not a lot of info out there about sarcomas.  My husband was initially diagnosed in March of 2002.  After having 2 surgeries and radiation on his left thigh he was "clear" for 4years!!  At his CT scan in July of 2006 they had found the cancer had metastisized to the lungs.  At that time at MRI was also done and found 11 tumors on the spine.  At this point we transferred all records to the Mayo Clinic in Rochester, MN.  The first step was radiation to the spine involving the worst area.  After that chemotherapy was administered.  Three months of chemo and things were looking good!  He went 10 months with out any further signs or symptoms.  This last October they could see the tumors were back in the lungs.  So we started another round of a different chemotherapy, Gemzar and Taxotere which did nothing for the tumors.  In fact they had doubled in size.  This last week another chemptherapy was started Ifosamide and Etoposide.  The first round and this last round have been by far the worst for side effects!  The second round of the Gemzar and Taxotere were the easiest for him. 

I know how frustrating all of this can be, because of its rarity!  There just isn't a lot of info out there about this type of cancer.  And what I have found is very negative and depressing! 

Anyone out there that would like to share stories, I would love to hear them!  We all need each other to get thru this aweful disease!  Sometimes I think the caregiver is more negatively affected because of the unknown!

I look forward to hearing from some of you!

Hi Ya'll!

I'm new here myself ....I have Myxoid Liposarcoma and have been NED for 23 months.

Don't know what to say but that I will check in from time to time. I'm also

on the Sarcoma Alliance site as skunkhunk. Please feel free to contact me.

Things will bre great in '08!

Skunkster

Just stumbled onto this site while surfing the net looking for more info on myxoid liposarcoma due to a recent diagnosis on my wife.  Here is our story:  My wife is 31, 18 weeks pregnant, and was just diagnosed about a month ago with a low grade myxoid liposarcoma.  As you can imagine, we were floored by the news.  Anyway, we immediately started trying to formulate a plan of treatment which meant meeting with the surgeon, oncologist, and in our case, a maternal fetal doc.  The original surgeon felt that due to the low grade of the tumor that we could wait until after birth in September to have a follow up operation and any radiationt therapy that was required.  So, we met with a radiology oncologist whom, on the other hand,  suggested that the best course of action was to terminate pregnancy and seek therapy immediately.  Well, I don't need to tell you how that news was received.  Anyway, we were not at all satisfied with the treatment up to date, so we sought a second opinion at Memorial Sloan Kettering in New York.  Thank God we did that.  After meeting with the surgeon (I'd rather not mention their name) you would think that the treatment we were receiving locally was far from adequate.  MSK's course of treatment is a second surgery scheduled in two weeks and NO follow up with radiation unless the cancer comes back.  The docs at MSK were stunned at the treatment and treatment recommendations we received locally.  To think, my wife would have been exposed to 6000 cGy of radiation needlessly and only being 31 she will live long enough to suffer the side effects of such and exposure.  Anyway, I hope both of you and your familys are well.  God bless.