Reply To: Please share your experiences with MMMT/Carcinosarcoma
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I am so grateful for your work! I wish I had found this earlier. I was diagnosed with stage 3B MMT Ovarian Cancer in May. After doing research on treatment options in my area, I chose to have surgery at Brigham & Women’s Hospital with follow-up oncological care at Dana Farber Cancer Institute in Boston. My surgery was 17 hours, with complete bowel resection as well as removal of all tumors. Three days after the surgery my incision split open and the contents of my bowels were spilling onto my abdomen. Another 12 hour surgery and everything was repaired. I was in the hospital for three weeks healing from these surgical procedures. I had the best care I could have imagined, I’m actually nominating my nurse from this stay for a Daisy Award. I decided to have my treatment at Dana Farber Cancer Institute in Boston. I knew this would position me for the best possible treatment as well as possibilities for clinical trials/new meds should I need these. There is nothing like being at a research hospital. I was treated with Carboplatin/Taxol. The cycle was Carboplatin/Taxol one week, followed by three weeks of Taxol only. Then repeat. I was allergic to the Taxol, fortunately Dana Farber has an allergy group dedicated to oncology. It turns out I had to have the Taxol over 12 hours (argh) in the allergy unit, under constant supervision.
Several weeks in I began to get CIPN Chemo Induced Peripheral Neuropathy in my feet and hands. CIPN caused by Carboplatin doesn’t always resolve and my oncologist was concerned about my quality of life post treatment. After a few more Carbo/Taxol treatments my oncologist changed my drugs due to the CIPN. (I was loosing my ability to walk without tripping. I was beginning to loose too much feeling in my fingers to work.) My doc changed the treatment plan to Carboplatin/Gemcitabine (also known as Gemzar) While I found the carbo treatments exceptionally hard, the taxol was not nearly as bad and my quality of life was pretty good given how much chemo I had in my body all the time! But the carbo/gemzar was beyond awful. The nausea and exhaustion was like nothing I could have imagined. However, we forged ahead. I did get great relief from my nausea with medical marijuana, it was a life saver. Three weeks ago I had my scans. Two weeks ago I met with my oncologist to discuss the scans and what’s next. My scans were clear. Clean margins were achieved surgically last spring. I am cancer free- now! During the visit to my oncologist she said she was confident my cancer would not return. I was aghast. I pressed her, really? MMMT doesn’t leave anyone alone, why me? My surgeon explained my cancer was unusual because the mets were self-contained, no polyps anywhere, so he was able to get clean margins. (to the naked eye. biopsies confirmed) Cancer is cancer. It can always come back. But for now I will live confident in my body and what it can do. Fully aware I’m lucky everyday I get to live, love, laugh, cry….just be. Be. Thanks Diane for being you and bringing this type of cancer into the light in order to get the research we all need!! You are remarkable!
My Surgeon is Dr. Ross Berkowitz at Dana Farber/Birgham & Women’s Hospital, my oncologist is Alexei Wright, Medical Oncologist, researcher (gyn cancers), and Faculty member Harvard Medical School. You can see here the collaborations between Dana Farber and MGH (Mass. General Hospital) as well as other hospitals in the Boston area.
I never once thought about the care I was getting, I never doubted Dr. Berkowitz or Dr. Wright. At DF you are partners with your docs and they make you feel that way, these are not just words. They actually listen. They care. They cry, they laugh, they live this with you. The nurses are beyond amazing. As strange as it may sound my husband and I loved being at DF. We felt like we had a family there supporting us throughout our journey. And as much as I got “good medicine” for my cancer, the empathy, caring, and honesty I experienced were equally important. Never Give Up!