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Sharon_in_San_Francisco's Recent CancerCompass Activity

  • Sharon_in_San_Francisco has replied to a post on the message board

    Hi - there are a few hundred women with uLMS - uterine leiomyosarcoma where it was thought to have been a normal fibroid but was LMS.  PLEASE ask the doctor to order hormone RECEPTOR test on the tumor they removed. If highly positive for estrogen or progesterone receptors... it means estrogen makes the cancer grow. You want to stop all estrogen. Even after menopause, you want to take an estrogen blocker... call...

    December 05 at 4:14 AM view post
    • Sharon_in_San_Francisco has replied to a post on the message board

      Please join us on FACEBOOK where our LMS group has 2400 members with LMS!  You will find much info and support there! LMSarcoma Direct Research FoundationFace Book Group:https://www.facebook.com/groups/lmsdr/ Also I wrote these LMS Boot Camp webinars for the newly diagnosed http://lmsdr.org/boot-camp-new-patient/ hugs, Sharon Anderson  Executive Director, LMSarcoma Direct Research Foundation www....

      December 25, 2017 view post
      • Sharon_in_San_Francisco has replied to a post on the message board

        Try this link:   LMSarcoma Direct Research FoundationFace Book Group:https://www.facebook.com/groups/lmsdr/ The moderators will send you a question to answer before accepting you because it is a confidential group. L, Sharon

        September 29, 2017 view post
        • Sharon_in_San_Francisco has replied to a post on the message board

          Join our LMS Facebook Group...over2,000 members - it's closed and private.  You must answer the questions the moderators send you to be accepted into the group. LMSarcoma Direct Research FoundationFace Book Group:https://www.facebook.com/groups/lmsdr/ L, Sharon

          September 29, 2017 view post
          • Sharon_in_San_Francisco has replied to a post on the message board

            Hi, I'm still NED (no evidence of disease) since 2004.  Here's my history: 2002 dx ULMS, stage Ib 2003  lung met removed surgically 2004  chest lymph node removed surgically then had my ovaries removed and took Arimidex for 7 years.  I've never had chemo or radiation.. just surgeries and Armidex (estrogen blocker.) I'm the Executive Director of LMSarcoma Direct Research Foundation (LMSdr.org...

            August 07, 2017 view post
            • Sharon_in_San_Francisco has replied to a post on the message board

              Hi Geri, I'm sorry you had to join this club. If it helps, I'm a 15 year ULMS survivor.  I had lung tumor for 2 years after removed by surgery. I have not had anymore tumors since then...12 years.  I am the Executive Director of a nonprofit which raises money for LMS research and patient education/support.  We have a Facebook Group with 2,000 members... which is huge for such a rare cancer.&...

              April 09, 2017 view post
              • Sharon_in_San_Francisco has replied to a post on the message board

                Hey just letting you know that there are over 1,800 LMS families on the LMSdr Face Book Group.  It's private so your messages won't show up anywhere else on FB.  Lots of info and support there: LMSarcoma Direct Research FoundationFace Book Group:https://www.facebook.com/groups/lmsdr/

                January 07, 2017 view post
                • Sharon_in_San_Francisco has replied to a post on the message board

                  Please join us at LMSDR Face Book Grouphttps://www.facebook.com/groups/lmsdr/ We have other Canadians who can help you. Sharon

                  November 28, 2016 view post
                  • Sharon_in_San_Francisco has replied to a post on the message board

                    I will approve you!  What name should I look for (your face book name) L, Sharon

                    November 20, 2016 view post
                    • Sharon_in_San_Francisco has created a new message board discussion

                      Hi - I'm a 15 year ULMS survivor stage IV.  I've never had chemo only surgeries.  I took Arimidex (an estrogen blocker) because my tumor was 99% positive for estrogen receptors.  I started Arimidex 12 years ago...took it for the first 7 of those 12 years. I've been NED (no evidence of disease) since then. I help run a Face Book support group which is closed and confidential.  We have 1800 people ...

                      November 20, 2016 view discussion
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                      About Sharon_in_San_Francisco

                      Patient
                      Other Cancer
                      After Treatment, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Emotional Support, Hormone Therapy

                      Feel free to contact me 2taikomom@gmail.com .................................................................. MY LMS LIFE-LINES ========>>> We have 800 LMS families on the ACOR Leiomyosarcoma online support group. Join here: ACOR L-M-Sarcoma http://listserv.acor.org/archives/l-m-sarcoma.html ......... My LMS Foundation: "Working not Wishing" www.LMSdr.org .................. LMSeAlerts News Bulletin: http://health.groups.yahoo.com/group/LMSeAlerts/ .............ULMS & Hormones Study Group: http://health.groups.yahoo.com/group/ULMS-HormoneTherapy/ ************************************************************************************** My LMS History: 1/2002 dx ULMS (fibroid) MI 10/10 hpf, high grade 1/2003 1 L lung met removed by VATS 9/2003 ovaries removed after tumor tested 99% Er and Pr positive 1/2004 vaccine trial at Dana Farber - didn't work 5/2004 1 met in chest lymph node & 1 met in L lung removed by thoracotomy 5/2004 started Arimidex (AI) for 99% estrogen & progesterone receptors NED ever since! (no evidence of disease) No chemo, No radiation, No angiogenesis inhibitors so far. Just 3 surgeries & an aromatase inhibitor (AI) estrogen blocker, Arimidex. NED since 5/2004 - since taking the AI. Fingers crossed! .......................................

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