CancerCompass message board discussion started by Debralyn on 2/13/2007 http://www.cancercompass.com/message-board/message/all,9569,0.htm Sat, 06 Sep 2008 00:00:00 GMT Sat, 06 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ The type of cancer I've got, is Leiomysarcoma. This is what was in my report of my Ultra Sound onFriday the 09/02/07.  Macroscopic Description.  A polyp measuring 5x4x4cm was received.  On cut section a fleshy appearance was noted.Conclusion:  Biopsy Cervical Polyp.  The features are those of an epithelioid Leiomyosarcoma arising in the background of a Mullerian Adenosarcoma.  Correlation with the clinical features is advised.An inhomogenous bulky uterus measuring 6.1 x 4.2 cm was noted.Endometrial cavity appears thickened with solid  and cystic components measuring 1.7cm.No free fluid in POD.The above is an email I received from my sister who lives in South Africa, I would like to find out more about her cancer and see if there is any help I could provide.  Debralyn Tue, 13 Feb 2007 00:00:00 GMT hi,my sister has leiomyosarcoma, here's a few things I've learned:)leiomyosarcoma is a kind of (soft tissue) sarcoma ; its a rare cancer of smooth musclesuterine leiomyosarcoma is not the same as uterine carcinoma (cancer)consult the NCI (National Cancer Institute) site www.cancer.gov for definitions, information, treatment recommendations, relied on by everybodyleiomysarcoma is fast growing ; surgery is the most effective treatment ; important to seek treatment ASAP while tumor is operable ; my sister's got so big, it go tangled up in her small intestinesconsult Weiss at Emory Univ. (well respected pathologist) to confirm diagnosis (send slides)there are also groups on yahoo & google you can join, for advicehope that helps,Del   Delchi Fri, 16 Feb 2007 00:00:00 GMT --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----  You might want to contact this person. Her mother has MMT and a combo tumor. She heads a yahoo online support group.LMS has an online support list on www.acor.org, mailing list leiomyosarcoma. Foodmaven Tue, 20 Feb 2007 00:00:00 GMT Less than 4 people out of a million will ever have this cancer.  It's a very agressive soft tissue cancer.I was diagnosed with Leiomyosarcoma in Sept. 2001.  This cancer was found 'outside' my uterus.  I had my uterus, ovaries, tubes, lymph nodes removed.  For 2 years my check ups were 'clean'.  Then, in July 2003, I tripped & fell on my chest. When the emergency doctor saw my x-rays he gave them to me & said to go see my oncologist (who did my surgery) as I had spots on my lungs.My oncologist did a ct scan & a ct guided biopsy - sure enough the cancer was now in my lungs.  I started chemotherapy August 2003.  My 'schedule' was Gemzar the first week, Gemzar & Taxotere the 2nd week, injections daily (Neupogin) 3rd week, then start over with Gemzar again.This schedule was for 18 weeks. At 9 weeks I had a ct scan - showed that the spots were reducing in size - at the end of 18 weeks, another ct scan - spots were gone.3 months later, ct scan again - spots were back - in April 2004, started 18 weeks of chemo again (gemzar & taxotere & neupogin injections).  Again, 1/2 way through chemo my ct scan showed that the spots were shrinking.  At the end, gone, again. Three weeks after the last treatment, I went on vacation to Oregon & went river rafting.  10 days later, I had surgery to remove a resistant spot on my left lung.  4 1/2 months after surgery, I was on chemo again (January 2005), only this time it was adriamycin - once every 3 weeks (total of 6 treatments).  Ct scans again showed the spots were gone.  My oncologist sent me to Stanford (October 2005).  The head oncologist said that my oncologist was doing exactly what they would reccomend.Another ct scan  & they (spots) are back.  So, in January 2006, I was back on gemzar & taxotere.  Also, the spots were larger & at the end of 18 weeks I still had a fairly large one.  I took a 6 week break then went back on gemzar & taxotere (with nepogin injections) (July 2006)- this 18 week treatment ended Nov. 2, 2006.  My ct scan showed some scarirng on the lungs.  I had a ct scan 2 weeks ago - haven't gotten the results yet, but will when I go see my oncologist & thoracic doctors. Ever since my first surgery (2001), I have not had any symptons to alert me to any cancer.  I have to rely on the ct scans.I've lost my hair, grown it back & lost it again (starting to grow back now, but not a whole lot of it).  I lose my sense of taste when I have gemzar & taxotere.  Takes about 7-9 days before I can taste again.  During those 7-9 days everything tastes salty, even water, but I try to drink as much as I can.I continue to work full time (commuting an hour each way), go on vacations & live one day at a time.  I don't give up or quit. I don't know if what I've written helps, but please feel free to e-mail me.Sincerely,Candice Tiller Cotterill Candy Tue, 20 Feb 2007 00:00:00 GMT Also Leiomyosarcoma.info hope this helps. Mail me off list he problems with link etc. Jen x uk Mum Fri, 11 May 2007 00:00:00 GMT I Candace, I would really like to talk with you. I have leiyomysarcoma, with tumors on both lungs and my perlvis. I was taking gemcar and taxotere, but sudennly, they stopped working. The tumor in my pelvis got bigger. I am at Sloan Kettering, but they don't seem to think of surgery as an option, and I am very scared. I would appreciate it if you would write back.  Paulette guenivere Sun, 17 Aug 2008 00:00:00 GMT