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Leiomyosarcoma Leiomyosarcoma

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Unread 05-08-2010, 08:52 AM

I was diagnosed with Leiomyosarcoma in 2007 when having a hysterectomy done. I did chemo and was fine until 3/2010. Scans showed several pelvic masses and cancerous mets in my lungs. I had surgery to remove 3 cancerous masses on my bowel. I had MRIs, Cat Scans and a Bone Scan done. Appears that its spread to my Thoracic Spine and they see inflammation very possibly cancer in my hip bone. Has anyone had experience with this? If so, could you please give me some insight on treatment? Life span?
Thank You
Maria/Whiting, Indiana
Hyst 7/2007
ULMS DX 7/2007
Chemo 8/2007-1/2008
Scans 3/2010 showed masses in bowel/pelvic and lungs
Surgery 3/29/2010 removal of pelvic/bowel masses
Have an appointment with Sarcoma Specialist
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Unread 05-08-2010, 10:41 AM
Re: Leiomyosarcoma

I am so sorry that you are experiencing ongoing issues. I have not had any experience with the type of cancer you are experiencing but just wanted to send HUGS from across the border.
I am sure someone will be along soon to offer the advice you need.
Unread 05-08-2010, 11:34 AM
Re: Leiomyosarcoma

Hello. I'm sorry to hear about your complications. I'm close enough to Johns Hopkins that I use that hospital for my cancer issues. If I didn't live sufficiently close to Hopkins, though, I'd have tried one of the Cancer Treatment Centers of America. I checked and found that there is a Center in Zion, IL. Just in case you wanted to try for second opinions on how to see that your issues are treated . . . .
Please keep us posted on how you are doing, okay? There are many brave women here.
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Unread 05-10-2010, 05:04 AM
Re: Leiomyosarcoma

Hello, Maria, I've been watching your thread to see if anyone came on to talk with you about their experience. I did find a web address that seems to have a listserv. It's a leiomyosarcoma site, here:
Also, I wanted to tell you about the search engine associated with this site. Even if no one comes on right now to talk with you, it's possible that there were threads at some point in the past where your issues came up.
Very best wishes to you.
Unread 05-10-2010, 07:21 AM
Re: Leiomyosarcoma

I'm sorry my only experience was with my BF who had this, and a very similar scenario with mets. I know from that experience that you're on the right track seeing a sarcoma specialist, as sarcomas do have special challenges. They would know about additional treatment options available for you to try. I know its discouraging to get that sort of news but wait and hear your options. I'll be thinking of you. If I can help with more info specific to my/our experiences, please PM me. Sending hugs and hope.

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