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From: Kate
Remote Name: 64.252.97.223
Remote User:
Date: 18 Jan 2005
Time: 21:06:59
Dear Katie, In 1989 after a TAH/BSO I was diagnosed with Leiomyosarcoma. I thought nothing was there to worry about because I had been diagnosed with malignant melanoma in 1982 and nothing happened further with that. Surprise, Surprise in 1992 I was diagnosed with recurrent Endometrial Leiomyosarcoma and treated with megace, 320 mg per day for 8 yr, 1 mo and 3 weeks followed by 2 sessions of MAID chemo (adriamycin, mesan, isofosfomide and DTIC and 2 sessions of M-ID with the adriamycin removed because I had such a hard time with it) which was pulled because of little response and my oncologist thought it would kill me. In March 2004, after finding out about the ACOR (www.acor.org) list I went to Dana Farber Cancer Center and am being treated at the Sarcoma Center. I found out that there is no such thing as Endometrial Leiomyosarcoma - I have Uterine primary with mets to the lungs, colon, on the vena cava and 2 small on the liver. I have just returned home from surgery to remove the on one the vena cava (6.9 x 7.2 cm), 2 near the colon, and the appendix which had 2 on it. I don't know if myometrial LMS is similar to endometrial LMS but it is possibly a mistaken diagnosis. What I found at Dana Farber is that the meds I had been on would not work. I also went to www.leiomyosarcoma.info to check out more info. I think if you check out both these sites you will be able to obtain more information for your mother. I hope this helps. Kate 23 yr survivor malignant melanoma 16 yr survivor ULMS
From: Jan
Date: 22 Apr 2002
Time: 04:07:14
Remote Name: 65.102.140.208
Thank you Kent for sharing your story. I was diagnosed in March after having a "cyst" removed from my thigh. Treatment was wide excision. DX low grade LMS. My question relates to the probability of recurrence. And, since this is such a rare disease, where do I find a list of doctors who specialize in treatment? Thank you again for your story and updates. God Bless.