Kent Field's Leiomyosarcoma Info Forum

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Hi, I was diagnosed with vaginal leiomyosarcoma nearly three years ago and my first tumour was taken out without clear margins, I had a reacurrence and then the disease spread. I had pelvic radiation and then even with the spread for some unbeknown reason my tumours stopped growing and are just sat there I havent had any chemo we are saving this for now. when I was first diagnosed and started researching it scared the life out of me however reserching helped me find Sarcoma specialists who know how to deal with this disease and others who are surving and some for 20 plus yrs so I found the hope and the light at the end of the tunnel. The radiation treatment was hard and has left me with some problems but I am still alive and still fighting and still researching and learning aboutthis disease..

I had leiomyosarcoma 22 years ago. However, at the moment I am quite concerned and worry, and wondering if it is possible that it can return after 22 years. My cancer was in a uterine fibroid. I was 30 years old at the time. The cancer had not spread and I had a hysterectomy. I have been feeling very tired lately. My concern has been that I have lumps on both sides of my submandibular gland and I have tiny nodules in my thyroid that of the hypoechoic kind. Also, I now notice that I have a lump on the inside of my hand just above my wrist. My doctor thinks it is just a lipoma. I have been told a couple of years now that I have a benign hemanginoma. I hope that is all it is. I have ongoing pain in my left lower pelvic quadrant, and last year it was so terrible i had to go to the emergency at the hospital and was put on morphine. All tests came back negative and nothing showed up on the cat scan. I recently did a ct scan with contrast of the abdomen, pelvic and neck region and everything came back with good results. Also, I did some bloodwork for cancer markers and everything came back negative. I will be doing another colonoscopy as my doctor thinks it is a good idea even though i had one done two years ago. I am also due to have an ultrasound scan and I am going to see the ENT specialist and the endocrinologist to deal with the lump on the submandibular and to check out the nodule in my thyroid and to get a biopsy. But yes, I have lived for 22 years post leiomyosarcoma. One has to be vigilant with this type of cancer. Catching it as early as possible gives one the best chance of survival. I eat a lot of mushroom for the selenium and take my multivitamin. I wish everyone here on this site good wishes and good health. Stay strong. Vicki Sandra Mentor-Nunez

i am a leiomyosarcroma survior i was in stage four i had five tumor in my palavs. this was in january 2007 i get tested ever three months and i am down to one pain bill. with out God i believe i woulnd't have been here today. i was only 39 when i got sick.

Currently undergoing chemotherapy. Each CT has shown shrinkage in my tumors. I am on my tenth round without a break. (Six months) Feeling and looking good with no side effects. I am being treated with Gemzar and Taxotere. I understand what you're all going through and it sucks I wish you all the best and keep fighting.

I am a two and a half leiomayosarcoma survivor and I just got a ct scan done last thursday. All is well. I hope this is helpful to all those stricken with this deadly cancer. Other than the standard chemo and radiation I take vitamins daily flac seed oil, vitamin d, one a day, selenium,vitamin c and an herb called graviola. the flax seed selenium and graviola are to stop the cancer and so far so good.