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Posts: 3
Joined: Jul 2006

Happy Fourth of July! I have recently been diagnosed with stage four leiomyosarcoma. I have been to two doctors. Both want to start me on chemo. It has been recommended that I seek out therapy at MD Anderson because they have sarcoma specialists. Trying to get into MD Anderson has been similar to trying to jump through hoops. I don't know what it takes to get an appointment. They have all my reports, medical slides, etc. They keep telling me that this cancer is often misdiagnosed and very rare. Any suggestions would be greatly appreciated!

Posts: 1561
Joined: May 2006


You may want to contact your diagnosing phyician to assist you in getting your appointment with MD Anderson. You can also contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day and can assist you with information on your diagnosis as well as give you resources in navigating the health care system. They can be reached at 1-800-227-2345.

I wish you the best on your treatment.

Take care and be well,

CSN Dana

Posts: 2
Joined: Nov 2006

Hi, Theatricaleyes. Have you had any luck getting to M.D. Anderson? My wife, who is the real Paulia, was diagnosed with a sarcoma last September. Our internist sent her to our local cancer center and the oncologist said that tere was only one place for her to go and that Was M.D. Anderson. We went there last November and that was when she was told that it was a leiomyosarcom. We were then assigned to a surgical oncologist, medical oncologist and a radiation oncologist. They then planned the treatment and the surgeon was the captain of the team. They set her up for chemo, followed by radiation and then surgery. Since we live in California, she could not have the treatment in Houston. She had one course of chemo and then we returned to HOuston for evaluation. There was minimal change. We returned homed and she started having chemo again, but she had a bad reaction to it and ended up in the hospital in a coma. She fully recovered and went on to have radiation. Her tumor was so unigue that she had to go to UCLA (105 miles away) five days a week for five weeks. Six weeks later we returned to Houston where she had surgery. They removed a barbell shaped tumor the size of a grapefruit attached to an orange. She also had extensive plastic surgery. That was five and a half weeks ago and she is recovering fairly well. The pain is minimal, but since the tumor was in the groin and pelvis, she has to limit the amount that she can sit to protect the skin graft.

At first we thought that everything was great, but she had another problem. Her cancer had invaded an AMV (arterio-Venous malformation) which is a non-cancerous tumor that had been neutralized. This AVM could not be removed without great risk of fatality. They did remove a major portion of it, but could not go any farther without risking her life. That left some of the cancer cells. Right now it looks like there is nothing that can be done but we will be going back to M.D. Anderson to start looking at other options.

We would like to hear more about your LMS, what you have had done and how you are doing.

Posts: 5
Joined: May 2007

I was diagnosed with Stage IV Leiomyosarcoma in May of 2005. If you live near NYC, Martee Hensley ( Sloane Kettering) is doing chemo with Gemcitabine (Gemzar) and Taxotere. I found a local onlcologist who did my emergency surgery to treat me with the same protocol. My tumor was the size of a melon. Almost 2 pounds. The local Dr. here is fabulous. Dr. Benjamin Schwartz. Babylon, NY. I have been cancer free Since last chemo treatment. He is an excellent surgeon with great credentials. Accepts most insurance.

Catrinka's picture
Posts: 4
Joined: Oct 2007

Hi Bella29,

Just wanted to see how you're doing since your post on 9/11/07/ I was diagnosed with LMS on 9/7/07 and am currently half way through my chemo. I'm on the same two drugs you were on. I'd love to hear about your experience with chemo and such. How many treatments did you have? I have to have 18 and will have my 8th treatment this thursday. I haven't lost my hair but it is thinning a little. I'm taking herbal supplements and Goji berries which I believe have helped me. How did you tolerate the chemo? I'm doing remarkably well. Thank you for your time.

Posts: 2
Joined: May 2016

My sister was diagnosed with uternine leiomyosarcoma. She lives in Toronto Canada. She is in shock and unable to figure things out. Could you help me?

1) Which hospital would you recommend? Mount Sinai or Sunnybrook hospital.

2) She had surgery to remove fibroid and the biopsy came back with leiomyosarcoma.  She hasnt been seen by oncologist yet. We are trying to CTSCAN done.

3) What does OHIP insurance cover and what it doesnt cover? 

Thank you. appreciate your help.

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