Our forum is experiencing technical difficulties with comments being displayed. We apologize for the inconvience.

Please share your experiences with MMMT/Carcinosarcoma

GCS Project Home Forum Share Your Story Please share your experiences with MMMT/Carcinosarcoma

Tagged: ,

Viewing 34 reply threads
  • Author
    Posts
    • #3888
      dmred52
      Participant

      I was diagnosed with Stage 4b GCS in April of 2015. Surgery was not an option for me. I consulted with 6 major cancer centers with varied results. I was treated at 2 Cancer Centers before I found a knowledgeable and compassionate physician at Mass General Cancer Center with expertise in my diagnosis. My disease has been stable since August 2015 and I am taking Cyclophosfamide 50mg every day and receive an infusion of Avastin every 3 weeks. I am scanned every 3 months. With every scan, I hold my breath and hope for stability. I do not have remission but my cancer and I are co-existing.

      This is a rotten cancer and some women do better than others. No one knows why. That is why I started the GCS Project. It is my hope that as a community of GCS Women, we can find solutions to enable us to live longer. Please share your stories here. What has worked for you? Where have you been treated? If you believe that your experience will help others, please share. I look forward to hearing from you.

    • #3890
      Brenda R
      Participant

      Diagnosed Jan 2017. Full hysterectomy, with removal of ovaries, tubes, and omentum. Stage 3C2. Positive pelvic and para aortic nodes. 6 rounds of chemo. Opted out of Radiation. Just had a clean CT scan. Now we wait.

    • #3892
      Diane Redington
      Keymaster

      Was your cancer uterine?

      Congratulations on the clean scan.

      Where were you treated?

      Thanks for posting

    • #3893
      Allie
      Participant

      I was diagnosed in late February 2017 with carcinosarcoma stage 4b. One week later I had a radical hysterectomy and a laparotomy, followed by 8 weeks of carbo/taxol dose dense chemo. My second surgery to debulk the tumor(s) was on May 30 and am now receiving carbo/taxol every three weeks. My chemo was delayed after the 2nd surgery related to an infection – it looks like a hematoma (fluid collection) in my left peritoneal cavity which became infected with MRSA resulting in the placement of a series of drains. We are still battling the MRSA, but we forge ahead. I am being treated by Dr. Sue Davidson (surgeon) at Denver Health Medical Center and I receive my chemo at the University of Colorado Caner Center, Dr. Carolyn Lefkowits – the docs have been great including the gyn/onc residents and fellows. I am very thankful for this website, thank you for your efforts to connect us in this challenging journey.

    • #3894
      azkathy
      Participant

      I had my hysterectomy March 3, 2017 and they took all my lady parts. Diagnosed 1a. Finished 6 rounds of carbo-taxol on July 17. Chose the chemo because this cancer is so sneaky and unpredictable. I am having a PET scan on August 28. I feel fantastic and tolerated the chemo better than many. The hardest part is that life will never be the same.

    • #3895
      Diane Redington
      Keymaster

      Hello Allie,

      Thanks for sharing your story. I think your treatment speaks to the variation of treatment for this cancer. I was also diagnosed at Stage 4b. I was advised that I was not a surgical candidate at stage 4b. How are you doing now?

    • #3896
      kip
      Participant

      Brenda thank you for sharing your story. May I ask why you opted out of radiation?

    • #3897
      kip
      Participant

      I was diagnosed with stage 1a in April 2017 following a total hysterectomy with both ovaries removed. Presently on round 5 chemo carbo/taxol, having moved from a 3 week interval to a 4 week interval due to low neutrophils. My onco doctor is Anna Tinker at BCCA in Vancouver, BC. I’m scheduled for a radiation consult, but am hesitant because of the risk/reward with radiation. I would love to hear others’ opinions on radiation and also, I’m searching for a flow chart I saw on this site earlier re: staging and treatment.

      Thank you everyone for sharing your stories. Thank you Diane for putting this site together.

    • #3898
      Stephanie
      Participant

      Diane,

      Bless you for starting this project since it has been a godsend of information for me as I help my life partner (Karin) navigate her treatment options. She had a tumor removed last week in her left pelvis that developed towards the end of of 18 weeks of Carbo/Taxol after a full Hysterectomy in early February 2017 (we will share her full story soon).

      She is currently being treated at Mayo Clinic Jacksonville and her tumor samples are being sent today to Foundation Medicine for Genetic Testing. While we wait on the testing results (I’ve been told 4-5 weeks), we are aggressively seeking second opinions for her next treatment options. We are scheduled to see Dr. Robert Coleman at MD Anderson in Houston next week and I contacted UAB this morning to schedule an appointment with Dr. Birrer that is pending.

      Based on your experience and clinical knowledge can you offer any other opinions/options that we should consider? Also, I just posted information about using IBM Watson for treatment planning and I am curious of your thoughts on that as well since what I have read so far is encouraging.

      I hope that you continue to feel and do well. I can not thank you and your family enough for starting this initiative. Moving forward, I am committed to help drive our friends and family to the GCS Project for donations to this research on GCS.

      Thank you, Stephanie and Karin

    • #3899
      Allie
      Participant

      I was diagnosed in late February 2017 with carcinosarcoma stage 4b. One week later I had a radical hysterectomy and a laparotomy, followed by 8 weeks of carbo/taxol dose dense chemo. My second surgery to debulk the tumor(s) was on May 30 and am now receiving carbo/taxol every three weeks. My chemo was delayed after the 2nd surgery related to an infection – it looks like a hematoma (fluid collection) in my left peritoneal cavity which became infected with MRSA resulting in the placement of a series of drains. We are still battling the MRSA, but we forge ahead. I am being treated by Dr. Sue Davidson (surgeon) at Denver Health Medical Center and I receive my chemo at the University of Colorado Caner Center, Dr. Carolyn Lefkowits – the docs have been great including the gyn/onc residents and fellows. I am very thankful for this website, thank you for your efforts to connect us in this challenging journey.

    • #3908
      Stephanie
      Participant

      Hi Allie,

      I am sorry to hear about you challenges. Hang in there and so happy the blood cultures were negative:) Karin had 18 weeks of Chemo and developed some neuropathy in the bottom of her feet near her toes towards the end of treatment. Gentle foot massage (I use peppermint foot lotion) appears to give her relief and I think keeping her body moving helps as well. I think there are some precautions with massage while you are on chemo so please check with your clinical team first.

      I hope this helps and your will be done with chemo before you know it, Steph

    • #3909
      Kathy
      Keymaster

      Hi Kip,

      I’m a friend of Diane’s (40+ years) and have been working with her from the beginning to fight this disease. I am a member of the board of directors for the GCS Project, attend her medical visits as often possible and help with the science and medical aspects of this work (my background is in health care).

      I saw that you were looking for the flow chart on staging and treatments that you found on this website. It’s under the “What is GCS?” tab that has facts about MMMT, etc. Scroll down the page and you’ll find the flow chart.

      http://gcsproject.org/carcinosarcoma-facts/

      There are also video interviews on this website that you might find helpful. Here is one with Dr. Marcella del Carmen in which she discusses treatments for GCS:

      Diagnosis and Treatment with Dr. Marcela del Carmen (Part 7) [VIDEO]

      There is a transcript of the video available also (the link to the transcript is on the page).

      All the best to you,

      Kathy

    • #3912
      Brenda R
      Participant

      yes, it was Uterine. I was treated at The Springfield Clinic cancer Center, in Springfield, IL.

    • #3913
      Anonymous
      Inactive

      Diane,

      Thanks so much for your time and effort with this initiative. Unfortunately, I too was recently diagnosed (8/17/17) with Uterine MMMT (at age 56). I was initially diagnosed with cancer at the emergency room and learned only after my full hysterectomy surgery (8/30/17) that there was both cervical and peri lymph node involvement. My treatment has been a whirlwind. I feel things have moved so quickly that I really should have anticipated how rare and aggressive this cancer is. I am trying to stay focused but have been just devastated by how little positive information there is out there. I am blessed with the best possible medical team I could hope for (Dr. Victoria Bae-Jump, UNC Gyn/Oncology Womens Hosp in NC) and am 100% confident in their treatment plan. I begin 6 rounds of Taxol/Carboplatin chemotherapy on 9/28 and I believe they want to follow that with some type of radiation. I know treatment has come a long way I just wish there was more “recent” info and stats on MMMT. This initiative is a really good place to share our experiences, successes and even failures in hopes of helping everyone get the best possible treatment and outcome available at this time! Thanks again! Susan

    • #3914
      ann
      Participant

      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!

    • #3919
      ann
      Participant

      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.

    • #3920
      debbieroberts6
      Participant

      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.

    • #3921
      ann
      Participant

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

      Thanks!

      Ann

    • #3922
      Diane Redington
      Keymaster

      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

    • #3923
      Anonymous
      Inactive

      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.

    • #3924
      Anonymous
      Inactive

      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.

    • #3925
      AmyG
      Participant

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

    • #3926
      Jbiv
      Participant

      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

    • #3927
      Anonymous
      Inactive

      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!

    • #3928
      Anonymous
      Inactive

      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.

    • #3929
      Diane Redington
      Keymaster

      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

    • #3930
      Diane Redington
      Keymaster

      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

    • #3931
      Diane Redington
      Keymaster

      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

    • #3886
      Anonymous
      Inactive

      Hi Diane-

      That would be wonderful. Alexei (Dr. Wright) is young super engaged in her practice. The nurse practitioner that worked with Alexei and I was Anne Stewart. At DF you get dedicated chemo nurses ( which is really wonderful) I can give you these names as well.

      Dr. Berkowitz has been working in this field since he began working in medicine. He is truly a remarkable man, so warm, unusual for a surgeon.

      Let me know how I can be helpful. I know Dr. Matulonis is the department head for GYN Cancers at DF. Alexei is warmer and kinder in my experience. However, Dr. Matulonis has an interest in new therapies. I believe you have my email, please feel free to contact me directly. I would love to hear about how you started this. I have started non-profits before, I’m looking into a clearinghouse/website that will provide information on Cancer friendly employers and businesses, resources/workshops on work during treatment, for both cancer patients but again a focus on employers that are willing to say, yes, this is not an obstacle for me. Employee rights. ETC. I was relieved of my job during treatment, it was completely illegal, however, I saw many, many other patients at DF in my shoes. I found this troubling. I would like to help change the stigma that goes with cancer.

      Best wishes,

      Andrea

    • #4542
      Elayne Adams
      Participant

      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!

    • #4576
      Barbara Zielewski
      Participant

      I was diagnosed in October with MMMT Carcinosarcoma. Stage 3. I live in a very small town in Wausau WI and am not confident that I am getting the correct treatment for this cancer. I have little faith in my cancer Dr. as he is unable to answer a lot of my questions. He is also a little arrogant and his answer to me when I asked him if he consulted with anyone else, he said ‘I don’t consult, Dr’s consult with me”. I started chemo and I am two sessions in with 6 more to go. I am looking outside of my area, for a second opinion, and or to just ask another Dr. if I am being treated properly. I am considering cancer centers of America, or Mayo, Froedert. or Madison University. Does anyone know where to go to see statistics of our type of cancer?

    • #4584
      Shcolwell
      Participant

      If I were in Wisconsin, I would head over to Mayo for a second opinion. It is so important to feel confident in your treatment, regardless of what protocol your current doctor has you on. If you can, try a doctor or a treatment center with lots of experience in GCS. Mayo would qualify–and there may be other folks on this list who know of doctors who are closer to you.

      As far as statistics go–this is a “rare” cancer–and our oncologist is always saying that Karen is a statistic of one–she makes her own curve! She is Stage 4 uterine carcinosarcoma, diagnosed in 2011. So I wouldn’t go searching the internet for statistics–I would spend that energy finding a second opinion! Cheers–Suzanne

    • #4589
      Anonymous
      Inactive

      I am 60 years old and I was diagnosed in May 2017 with uterine MMMT/carcinosarcoma . My gynecologist referred me to Dr. Joyce Barlin at Women’s Cancer Care Center at St. Peter’s Hospital in Albany, New York which is just a 40 minute drive from my home. I had a robotic hysterectomy on June 9, 2017 and was staged 3C1. Two lymph nodes were removed and the cancer was found in just one. I started carbo/taxol treatments, one very twenty-eight days for a total of six. MY CA125 before surgery was 52 and after 1st treatment it was 18.5 and after my last treatment it was 13 and my CT scan was clear. I think I did well through my treatments after hearing about the hard times that others have had. My last chemo treatment was October 19, 2017. I still have the fatigue and some neuropathy in my feet but overall feeling pretty good now. I did meet with radiation oncologist and he suggested 30 rads but I chose not to do the radiation based on possible short/long term side effects vs. the reward. My gyn/onc/surgeon didn’t push for the radiation. I see my gyn/onc/surgeon on February 13th for my 3 month follow up since my last chemo.

    • #4593
      Anonymous
      Inactive

      To add to my previous post – due to the fatigue and neuropathy it is very difficult to adhere to a regular schedule. I have other health issues as well so I have decided that I can’t return to work so I am retiring early. This is not exactly how I pictured retiring after a 42 year career but I am thankful for every day God gives me.

    • #4691
      Admin
      Keymaster

      Thank you to those who have added your replies to this thread. However, we are working to make some changes to this section, by promoting each story as it’s own topic. That way, your replies can be linked to an individual story or post.

      We are asking those who have posted their stories to repost them in our new format. And those who want to post, pleases start a new topic. Thank you for helping us to make this forum better.

      You will no longer be able to reply to this thread, but can start your own.

      Here are the specific instructions on how to do so: http://gcsproject.org/how-to-login/#ShareYourStory

      Thank you from the GCS Team

Viewing 34 reply threads
  • The topic ‘Please share your experiences with MMMT/Carcinosarcoma’ is closed to new replies.