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Posts: 2
Joined: Nov 2011

How do I deal with such an unknown. I cannot find another person with this diease. The recurrance within a year is very scary. Who out there know anything of how to deal with such a rare cancer.

Posts: 7
Joined: Jan 2012

There are lots of entries for LMS
I did a search for you and if you go here you can read and see what is helpful


I was diagnosed with Uterine LMS 1 week ago.
Surgery for hystorectomy 19 Jan 2012 (ovaries tubes but hopefully no lymph nodes).

5.7cm masss - probably a fibroid now LMS., poorly differentiated, atypical spindle cell, frequent mitoses (14 / 10HPF's).

Appears not to have spread when viewed on CT scan and ultrasound but all will be revealed after surgery.

It has been a couple of months since you posted - how are you going?

Fully_Present's picture
Posts: 5
Joined: Apr 2012

I'm a long term survivor of ULMS. I have gone 3 1/2 years thus far without recurrence of disease. (Diagnosed 11/08) I hope that you will do the same. I've got a blog with only positive, uplifting information for others with ULMS. It was frightening when I first searched the web - everything about ULMS was so depressing! That's why I started my Facebook page called Uterine Leiomyosarcoma - Integrative and Natural Treatments. You can find a link to my blog from there. I like to focus on lots of ways to strengthen the immune system and heal the whole person emotionally, spiritually and mentally as well as physically. Peace to you!

Posts: 2
Joined: Mar 2012

I was diagnosed in 8/11 and operated on in 10/11. I also had a kidney removed and there is 1 nodule on my lung. I am trying to finish my chemo. I have 1 more to go but am having problems with water retention, cellulitis, and shortness of breath. I am postponed another week. The chemo is Gemzar and taxotere. It sure has given me a run for my money. Within my area there are three, possibly four other people diagnosed with the same cancer. Two have passed away. If so rare, why is it happening to so many in such a short distance. There is no evidence of lms at this time from the scan. I am also working with a Dr. Tapp from Sloan Kettering. A good attitude is needed for this cancer. It can be done. Any comments on side effects.

Posts: 1
Joined: Apr 2012

There is good number of survivors and good support from mailing list cancer patients at acor.org
I was diagnosed with ULMS in October 2011. I am on my first round of gem.tax and it is kicking my b...t.
My side effects are extreme weakness and what they call it gemzar flu. Aches and pains. Fortunately so far no fever.
I am given Nupegen shots to get my white count going. This by itself causes bone pain. If this is how it is on a first cycle how am I going to survive 5 more.? I am praying that I can stabilize my tumor growth (pelvic & lungs) and qualify for surgery. Surgeries seem to be the answer if you want to buy years. On acorn.org list there are couple of women that are 7 & 11 years Stage IV survivors. The 11 year survivor had 4 chemos and 10 surgeries but it is ok, alive and living her life to the fullest. It can be done.

Posts: 2
Joined: Mar 2012

Good luck to you. They skipped my last chemo session because of the side effects. They were worse than the chemo. I had the cellulitis, shortness of breath and swollen feet. I was operated on and just a note each chemo gets a little worse with the side effects. They do have lots of drugs to counteract them though. With me they took a scan after three rounds of chemo and there was no return and after my last chemo in March still no return. They will be putting me on a hormone drug because they found that the tumors are fed by hormones. So, we will see how that goes. Hang in there, it can be beaten or controlled. I told my doctor that it's ok to give me bad news but also give me something good that I can hang onto. They are so afraid of being sued, they are afraid to say something to buoy you up. The Dr. from Sloan Kettering told me it was beatable and I said thank you. I will be seen every 3 mos. by both drs. and we just keep our fingers crossed and pray. Good luck to you.

Posts: 1
Joined: Apr 2012

Hi , i am very happy to read story of survival, my mother was diagnosed with LMs a year ago
Terrible i cant say how much i cried, she had surgery radiation and now chemio, and a week ago she had a recidiva in her abdomen abdvthe doctor say he couldnt operate because the cancer in her abdomen is 13 cm big , we live in italy what can we do my mother is only 57 i wont to die i cant live without her.

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