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Please share your experiences with MMMT/Carcinosarcoma

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 ann
(@ann)
Posts: 65
Trusted Member
 

I was diagnosed with carcinosarcoma in April, 2017. I had a total hysterectomy May, 2017. I have completed 6 rounds of chemo (Taxol/Carboplatin). I am currently waiting for a CT scan to be done next week.

I am interested in information that will make me proactive in helping to heal my body from cancer.

Thanks for your input!

 
Posted : 22/09/2017 9:01 pm
 ann
(@ann)
Posts: 65
Trusted Member
 

I am interested to read about your diagnosis. I, too, was diagnosed in April. I have completed the 6 initial rounds of chemo. I will have a CT scan on Friday and get the results on Tuesday, October 3. I opted out of radiation as my doctor suggested. What I saw on the Internet studies showed that radiation did not appear to make a big difference. That is not a recommendation - just what I found on the Internet studies; my doctor also said he did not suggest radiation.

 
Posted : 22/09/2017 9:01 pm
(@debbieroberts6)
Posts: 1
New Member
 

I was diagnosed with ovarian MMMT/carcinosarcoma in March of 2015. After debulking surgery and 6 rounds of chemo( Carboplatin,Taxetere and Avastin). NED for 8 months (taking Avastin) and then tried Doxil and Topotecan for 6 more months ending in December 2016. The tumors continued to grow. As this is a rare cancer there were not many avenues available, I tried to get into some clinical trials, but because of the sarcoma I did not qualify. Luckily I was able to get Opdivo donated off label in February. Began to see results in April and a CT scan in August noted tumor reduction. I continue to take Opdivo every two weeks. Hoping this will continue.

I was very happy to find this website. Looking forward to seeing more information on my rare cancer.

 
Posted : 29/09/2017 1:35 pm
 ann
(@ann)
Posts: 65
Trusted Member
 

Debbie, I am not familiar with the drug, Opdivo. Is that a new drug out?

Thanks!

Ann

 
Posted : 02/10/2017 9:01 pm
(@diane)
Posts: 31
Member Moderator
 

Debbie, I was so happy to read about your treatment with Opdivo. The GCS Project is supporting the launch of a clinical trial with Opdivo and another agent and Avastin. The trial is under the direction of Dr. Michael Birrer at UAB Comprehensive Cancer Center. The trial is in the approval process and we hope it will be launched for carcinosarcoma patients. Your experience gives me hope.

Fo those who are not familiar with Opdivo, the generic name is Nivolamab. It is the category of PD1 blocker. (Programmed Death 1). It has been successful is some lung cancers, melanomas and some other cancers. It is not approved for our cancer yet.

Please share your results with us. I am going to pass on your experience to the research team.

Diane

 
Posted : 19/11/2017 10:42 am
(@Anonymous)
Posts: 0
New Member Guest
 

Hello my name is Lin. I was 60 yrs old when I was diagnosed with Uterine Carcinosarcoma November 2015. I was misdiagnosed as having a Fibroid 2 months prior to that, and was only properly diagnosed when I sought out a different OB/GYN for a partial hysterectomy 2 months later.

Upon dx, I was immediately referred to MD Anderson in Jacksonville. 2 weeks later I had Robotic surgery to remove cervix and stage disease. I was fortunate to be staged as 1A. Still underwent 6 rounds of preventive Chemo. In April 2018, I will arrive at the 2 year mark since last treatment cancer free. Just had 6 month PET 2 weeks ago, all clear.

Some of the adjuvent treatments I initiated on my own, thru researching on the web include Curcumin (Healthysource.com) - I take 4 capsules daily split between breakfast and bedtime. Started this the day after diagnosis, all thru Chemo and now. have neve missed a day. Also, MD Anderson MD put me on Metformin twice daily. I am not diabetic, but was told recent studies show Metformin reduces chance of recurrence. I abstain from smoking and alcohol. Also eat TONS of green leafy veggies - Kale, spinach, and blueberries, blackberries. I try to abstain from any sugars or foods with excess sugars. Of course fruit contains sugar but the fiber mediates the sugar spikes. Cancer feeds on sugar. At first I eliminated meat from my diet, but found that resulted in not enough protein and muscle loss. So I have added in small amounts of chicken to maintain protein levels. Also do Yoga and have downloaded meditation app (15-30 mins per day) to alleviate stress and worry. I pray for all of us and hope this info helps.

 
Posted : 08/12/2017 11:28 am
(@Anonymous)
Posts: 0
New Member Guest
 

My post menopausel 63 year old wife was diagnosed with stage 3c ovarian MMMT in February 2017. She had a complete hysterectomy with removal of the lymph nodes above and below her uterus. After completing 6 rounds of carboplatin/taxol, her first post chemo CT scan showed new growth on another lymph node and a thickening of her lower bowel that is suspicous. She is being scheduled for a biopsy of the new growth. Her oncologist at Stanford is recommending a new round of Chemo using Ifosamide if her biopsy comes back postitive. She is also recommending clinical trials if there are any available. Does anyone know of any? We have family in LA, and Phoenix Arizona. We are located in the San Francisco Bay Area. Has there been any new research studies released that we can look at? We are not giving up the fight, But I have not found any real encouraging news for this disease if the first round of Chemo doesn't knock it out for a person in my wife's particular demographic.

 
Posted : 08/12/2017 2:03 pm
 AmyG
(@amyg)
Posts: 1
New Member
 

Hi Diane and Kathy, Who developed the flow chart on the GCSproject link? Thanks, AmyG

 
Posted : 18/12/2017 11:23 pm
 Jbiv
(@jbiv)
Posts: 1
New Member
 

Hi Everyone!

Thank you Diane for starting this website and for all of you sharing, it has been one of my only sources of comfort. My mom was diagnosed with stage 4b carcinosarcoma in September/October 2017 with metastasis in several other organs. They were able to do a modified radical hysterectomy but were unable to remove any lymph nodes due to them being too matted with disease. At this time she is doing three rounds of Taxol/Carboplatin and we will assess its effectiveness at the end of the third round. She is being seen by the gyneclogoical oncology team at Northwestern Memorial in Chicago, her doctor is Dr. Emma Barber and they are simply awesome.

Thank you and all the best

Jen

 
Posted : 19/12/2017 1:48 pm
(@Anonymous)
Posts: 0
New Member Guest
 

Hi Diane-

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!

 
Posted : 22/12/2017 8:33 am
(@Anonymous)
Posts: 0
New Member Guest
 

I forgot to give this link http://www.dfhcc.harvard.edu/about-dfhcc/ This about the collaboration of Boston Hospitals fighting and researching cancer together.

 
Posted : 22/12/2017 8:36 am
(@diane)
Posts: 31
Member Moderator
 

Andrea,

Thank you so much for sharing your incredible story. 17 hours of surgery followed by 12 hours of surgery! And the brutal chemo regimen. You must have been so healthy to tolerate so much. It sounds like you had fantastic care at Dana Farber. I think that really speaks to the need for GCS patients to seek care at a major cancer center with experience and expertise in current treatments as well as awareness of clinical trial in the pipeline.

Based on your experience, I would like to recommend your treatment team at Dana Farber. We are planning a trip to the northeast in January to visit Memorial Sloane getting and Dana Farber. We would like for doctors who deal with GCS patients to talk to each other and share results of treatment and clinical trials.

Best to you and please stay in touch. It sounds like you know to stay ever vigilant with this cancer. Congratulation!

Happy Holidays,'Diane

 
Posted : 22/12/2017 8:53 am
(@diane)
Posts: 31
Member Moderator
 

Thanks Jen for sharing the information about your mother. I am so happy she found a good treatment team. I was also diagnosed at Stage 4b and I continue to do well. Best to your mother for continued good care. WE have to work ever so fast to find better treatments and cures.

diane

 
Posted : 22/12/2017 8:58 am
(@diane)
Posts: 31
Member Moderator
 

Hello Debbie,

I am eager to hear about your experience with Opdivo and Avastin. My treatment team is talking about off label opdivo as a next step. What are your thoughts?

Diane

 
Posted : 22/12/2017 9:48 am
(@girltwin48)
Posts: 3
New Member
 

I was diagnosed in November 2017 with high grade ovarian: 70% endometrioid adenocarcinoma, FIGO grade 3, 25% serous, high grade, 5% clear cell. This is from my surgical pathology report. Grade 2c. Am currently receiving chemo with carboplatin and taxol.

I have called and faxed records to Dr Birrer in Birmingham asking to see him for a consultation/second opinion. So far, no luck with this, have left several messages with Jeannette.

Diane, are you in touch with him or know if he’s seeing patients there yet? If not, do you suggest anyone else? I live in Houston, had surgery by a GYN oncologist and chemo by Kelsey-Seybold, my Medicare provider. I’m an RN and feel confident that my care most likely wouldn’t be different at MD Anderson.

Any guidance or advice? Thanks!

 
Posted : 24/01/2018 12:25 am
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