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