CancerCompass message board discussion started by Mircaledrug on 5/31/2006 http://www.cancercompass.com/message-board/message/all,5502,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am looking for any suggestions. I have been researching Endometrial Stromal Sarcoma for my mother who has been battling this for 20 years. She is now 51 years old and this is the worst it has ever been. The cancer has metastasized through out her pelvic and stomach area. The main problem is the tumor that is sitting on her sciatic nerve and in her butt. It is extremely hard for her to get out of bed. We have tried many different treatments (chemo, radiation, chemo embolyzation, Cyber knife, and hormone therapy) we are willing to explore more options. We are looking for a miracle drug. Willing to try anything. Any ideas please let us know. Mircaledrug Wed, 31 May 2006 00:00:00 GMT Do you know that there is an online support group for ESS? To subscribe, write a message to Subscribe: Endometrialstromalsarcoma-subscribe@yahoogroups.com in an email saying you want to join. I am a 25 yr survivor as well and have had many operations. I go to a sarcoma center and I am taking Femara. My lung mets are stable for 5 years. I am on and off the drug. Other drugs are Arimidex and Aromasin. Familiar to you? If your mother has low grade, it should work on her or a combo of lupron + femara.OR Megace or Deproprovera or a bioidentical hormone. Join the list and ask questions. Chemo won't help low grade. Please join and find more answers than here. Lots of research articles for clinical trials too. R Foodmaven Thu, 08 Jun 2006 00:00:00 GMT I am battling ESS for the 3rd time. This is the second time in my lung. They say it is inoperable. I tried Tamoxefin and that did not help. I am now on Arimidex. I would like to know what sarcoma hospital you go to? Also I tried to join the support group you mentioned. I haven't heard anything. Is there something else I need to do? Thanks for your help. Jane Plain Jane Mon, 17 Jul 2006 00:00:00 GMT I was diagnosed with ESS, high grade, on June 30, had my surgery on July 11, all in 2006, am now waiting for my treatment plan, meet with my doctors on Aug 8th. I am confused, what are the usual treatments for high grade. Anyone had experience with this? I do belong to the yahoo group and it is very helpful. Pots2paint Thu, 27 Jul 2006 00:00:00 GMT I don't know if you are subscribed or not but here is the website with the email addresses to subscribe to the Endometrial stromal sarcoma group. http://health.groups.yahoo.com/group/Endometrialstromalsarcoma/ I am a co-moderator and I will see to it that you are subscribed if you are not yet. Rosalie Foodmaven Thu, 31 Aug 2006 00:00:00 GMT Jane, I am a patient at Memorial Sloan Kettering Cancer Center in NYC. There are sarcoma centers all over the US. IF you tell me where you live, I can give you a sarcoma center. I have had lung mets 3x and had surgery, now I am on Femara/letrozole and it is keeping me stable for 5 years now. I have progesterone positive hormones. Rosalie Foodmaven Thu, 31 Aug 2006 00:00:00 GMT I understand that Femara is now being used with Leiomyosarcoma patients. May I ask what your experience is with this drug? John Collins, Caregiver for wife, Christy Collins. August 16-20, 2002 Age 54 - Total Abdominal Hysterectomy (TAH) 13.5cm (5.32") Fibroid diagnosed as a Benign Submucosal Leiomyoma (fibroid). Pathology indicates that only 1 doctor reviewed the specimen and WROTE the following; Quote - "I believe it is benign" and the tumor (fibroid) "was difficult to diagnose." Unknown to her, an unexpected Supracervical hysterectomy is also performed at the same time as the total hysterectomy. Since then - CHRISTY COLLINS Major Medical Events July 11-13, 2005 Age 57 - Shortness of Breath - Non-productive cough - X-rays and echocardiogram reveal unidentifiable mass on left lung July 14-18,2005 Exudative Pleural Effusion - Bedside Thoracentesis removes over 1 liter of bloody fluid from left lung - Extremely large mass is now identifiable - Biopsy surgery is scheduled July 19, 2005 - Surgery to include Thorocotomy for Deep Wedge Biopsy times 2 and Pleuradesis with talc. Upon completion of surgery, surgeon calls the mass he had just removed from her left lung an "extremely strange presentation". Translation: He didn't know what it was. July 22, 2005 Oncologist's Conclusion; A MALIGNANT UTERINE LEIOMYOSARCOMA (ULMS) has arisen from the uterus and metastasized on left lung - Oncologist says she has low grade, slow growing ULMS and it is incurable but manageable. Pathology report reveals that 8 Doctors and 1 Technician compared the Total Abdominal Hysterectomy specimen removed in 02' with the 05' specimens that had just been removed and concluded that they were histologically the same. Translation: The microscopic structure of the tissues in the 02' specimen and the 05' specimen are the same. Oncologist agrees verbally and in writing. August 2005 Surgery to implant Port-O-Cath so chemotherapy can be injected into "pin cushion" type device. After surgery, the same surgeon who perfomed Thoracotomy biopsy and pleuredesis acts nervous and evasive when I ask him what is going on. August 25 & 26/2005 Chemotherapy - Gemcitabine & Taxotere September 8 & 9/2005 Chemotherapy - Gemcitabine & Taxotere THIS IS WHEN WE BEGAN MISTRUSTING THE ONCOLOGIST, SURGEON, HOSPITAL AND PATHOLOGY COMPANY AS THEY ARE ALL TIED TOGETHER, NONE HAD SARCOMA EXPERIENCE AND ALL WERE ACTING LIKE THEY DIDN'T WANT TO TALK TO ME. The pathology company that called it benign in 2002 is the same pathology company calling in malignant in 2005. September 27, 2005 After xray, Oncologist says "you're not getting any better" and tells her he is going to change her chemotherapy for the next day. FACT: Neither he, the surgeon or anyone else associated with this hospital ever showed us any negatives or any other physical proof to verify that she has what they say she has. Nor will he or anyone else associated with this hospital, refer her to a Sarcoma Center, which is just down the street. Instead he keeps giving her the chemo at AN AVERAGE $6500 a pop while he says he is conferring with MD Anderson in Houston. He also allows the surgeon, who didn't know what she had when he biopsied her on 7/19/06, to tell her that he can't remove the tumor until it reduces by 50%, but no one has ever told us how big it is or shown it to us. Hmmmmmm. September 28-30/2005 Chemotherapy - Adriamycin & Ifosfamide LAST DAY HERE - AFTER CHEMO WE TOLD ONCOLOGIST TO TAKE A HIKE AS WE HAD RECEIVED A 2ND OPINION AND HAD HIRED AN ONCOLOGIST WITH EXPERIENCE IN SARCOMAS. WE ALSO CHANGED TO A SURGEON WITH SARCOMA EXPERIENCE AND HOSPITAL (UAB IS A NATIONAL COMPREHENSIVE CANCER NETWORK - NCCN - DESIGNATED SARCOMA CENTER www.nccn.org )(THE OTHER HOSPITAL IS NOT) I BELIEVE THAT CHANGING IS WHY SHE IS ALIVE TODAY. October 19-21/05 Chemotherapy - Adriamycin & Dacarbazine A new beginning November 9-11/05 Chemotherapy - Adriamycin & Dacarbazine November 28-December 1/05 Chemo - Adriamycin & Dacarbazine December 20, 2005 - Life or Death Surgery to include Left Thoracotomy, Bronchoscopy, Harvesting of intercostals muscle flaps, Resection of 6th, 7th and 8th ribs, Left Pneumectomy, Pleurectomy, Extremely difficult dissection of enormous left lung and mediastinal 20 pound 23cm mass, Thoracic lymphadenectomy, Bronchioplasty and Reconstruction of chest well with large piece of Gore-Tex w/negative margins, /replace 16 pints of blood and blood product - ULMS is now Stage IV Surgical Remission January 13, 2006 - Post Surgery meeting January 25-27, 2006 - Chemotherapy - Adriamycin & Dacarbazine February 20-22, 2006 - Chemotherapy - Adriamycin & Dacarbazine March 17, 2006 - Scans - No evidence of disease April 14, 25, 27, 2006 - Physical Therapy May 4, 5, 9, 11, 2006 - Physical Therapy June 21, 2006 - Scans - No evidence of disease August 31, 2006 - Scans - Recurrence - Less that 1cm nodule discovered in lung. Blood drawn and tested to determine eligibility for Hormonal Therapy. September 13, 2006 - Eligible for Hormonal Therapy with Femara. Prescription written for 2.5mg daily. September 14, 2006 - Met with Surgeon Bhamsbest1 Thu, 14 Sep 2006 00:00:00 GMT  On 8/31/2006 Foodmaven wrote:I don't know if you are subscribed or not but here is the website with the email addresses to subscribe to the Endometrial stromal sarcoma group. http://health.groups.yahoo.com/group/Endometrialstromalsarco I am a co-moderator and I will see to it that you are subscribed if you are not yet. Rosalie Hi, I also have Ess just found out about it last month.  I tried to get on the support group site and have been in libo for about a week.  Wondering if you could help me out?  I'm desperate for info and suport I'm going in for another surgery in 2 weeks.  Thanks!!! crazeteach Tue, 07 Aug 2007 00:00:00 GMT