Diane’s Story Update

It will be 2 years since I was was diagnosed with carcinosarcoma (April 2015). I wanted to provide an update of where I am and what is going on with the GCS Project.

Clinically, I am pretty much the same. I am under the care of Dr. Michael Birrer at Mass General Hospital and continue to take daily cyclophosphamide 50mg and receive an Avastin infusion every 3 weeks until something changes. I am scanned every 3 months and the tumor and I continue to co-exist. No progression or regression. I can live with that. I feel very well and have a high quality of life. This allows me to focus on the GCS Project full time.

Still do not know if it is ovarian or uterine. I am now kind of hoping the MMMT is uterine because some research on uterine carcinoma (not carcinosarcoma) has identified many targetable mutations which means there may be more agents that are effective. Unfortunately, the research has not uncovered a lot of mutations with ovarian yet.

The most exciting news is that the research team at Mass General is focused on finding a cure for our cancer. They have completed the genetic analysis of over 60 MMMT tumors. One of the findings of this research as well as other MMMT research is that these tumors have one of the highest frequencies of chromatin remodeling dysregulation of all tumor types analysed to-date. Huh?

Dr. Birrer dummied it down for me so it makes sense.

There are a lot of ways in which normal tissue becomes cancer. The simplest way to understand it is if a gene gets mutated, it then hyper-functions and a normal tissue becomes cancer. In these particular tumors, we are seeing some of those events. But what is unique about the carcinosarcoma so far is that there is another event.  The DNA is stored in chromosomes and it’s wrapped in something called chromatin, which is a series of proteins. The early data that we have, and there have been a couple of other small groups who have suggested this also, is that this packaging is abnormal. This is important because there is whole new set of drugs that are called chromatin remodeling drugs. These drugs are coming into the clinic and they may be very relevant in the treatment of this disease.

Chromatin testing requires fresh or frozen tumor tissue. Many women who have undergone recent procedures have donated their fresh or frozen tissue. Unfortunately, tissue that has been “fixed” in the path lab cannot be tested so fresh tissue is required. I think this is pretty exciting. New research directions and a potential new class of drugs to attack this monster.

I was recently in Boston at Mass General for a tumor biopsy. The exciting part for me is that they were able to obtain enough tissue for both pathology and for research. My tissue is being used in the research.

More exciting, there was enough of my tissue to create a mouse model for study. In mouse, researchers  could quickly generate tumors resembling human tumor cells at both the genetic and morphologic levels. Accomplishing this using mouse models has provided an indispensable tool for studying tumor initiation, maintenance, progression, and response to treatment. For more information about mouse models, please refer to the NIH’s article on Mouse Models for Cancer Research.

The most exciting news is that the researchers are thinking that maybe we will have a clinical trial in the next year. A specific trial just for MMMT. This is where the cures are going to be found.

We have raised almost $250,000 for the research. We have to be the ones to support this research because not too many people are interested in our cancer. Thanks to everyone who has supported us.

Finally, the family of Holly Dunn is planning a tribute in Nashville to honor her career and her life. Holly’s wonderful family is asking people to donate to the Gynecologic Carcinosarcoma (GCS) Project Fund at Mass General Hospital as part of the tribute. The theme is “NOT ONE MORE”. I love it and we are so grateful for their generosity.

So that is all for now. Love you all and feel like we are on to this beast and will tame and slay it soon.

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12 thoughts on “Diane’s Story Update

  1. Thankyou Diane. So pleased to hear about a possible clinical trial next year. We all like good news!

  2. Diane,
    Outside of hearing that there is no more cancer, the next best thing to hear about you is that “things are pretty much the same”. It is just remarkable what you are doing to share information and to help move the research forward.

  3. Wonderful news about a possible clinical trial. Please keep us informed on signing up for it, if possible. Thanks!

  4. Diane, You made me laugh. A good thing. I have MMMT. Still in the staging of the diagnosis; However, I started a journal while doing my PET scan. “Killing the Beasties” Opening page “Besting a rare Beast”. Today I find you Besting our rare Beast. Thank you for the info.

  5. Amanda Witt - Suffolk UK (my sister directed me to your site from her home in Louisianna- she was also a nurse says:

    I was diagnosed with MMMT stage 4 in Uk in August 2013. My first treatment was a total Hysterectomy (TAH) and It was discovered It had already spread – shortly after into peritomeum, on to bladder and the odium which was removed at operation together with lymph sitting beneath the uterus BUT crucially not para Aorta lymph nodes. Chemo therapy started soon after operation 3 weekly cycles of Carbo/pacitel – no pain just absolutely exhausted – after 4 clcyles my CA 125started to go down. When I finished 6 cycles my CA 125 had dropped from 150 to 22 ( which meant I still had dormant disease which could not be picked up on scan as too small. at the time of the TAH histolgy taken from mass removed proved that it would be ‘receptive’ to Oestrogen and progesterone. So although it was not tested for my condition my oncologist gave me an aroma tase inhibitor called Anasatrozole which kept the dormant cells dormant for nearly 2 years
    then I had recurrance in in the para aorta lymph nodes. I have since had CA 125 climb to 52 and 2 lots of targetted radio therapy, Provera which he changed me to suppress progesterone. I my body now only two lymph nodes affected which have been reduce from 9 – 6 mm by introduction of a new version of Anastrozole called Exemestane Hormone therapy (Provera was very hard to take.) Bad new is MMMT has spread to a 2.4 mm circle on left lobe of brain. I have been referred to a neuro surgeon as it is felt I am very well and healthy in all other respects and the tumour has not gone deep into the brain. Do you have any knowledge of anyone ever having a case of MMMT Spreading to the brain / having the operation

  6. Hi Diane, I was diagnosed with Uterine Carcinosarcoma 2yrs. and 2 months ago. Had hysterectomy and 6 cycles of Carboplatin and Taxol. Cancer reacurred in Pelvic area after a year and 4mos. Now on weekly Taxol and Carboplatin every three weeks. I have not been able to tolerate the Carboplatin last two treatments so they are taking me off. This second round of chemo has taken it’s toll!! Some days hardly able to function. Good news tumors have shrunk about 70 percent, which doctors find surprising for CS. I have been so discouraged by the bad prognosis. My finding you is an answer to my prayers. I now feel there might be hope! Have given all your interviews from up at Mass General to my doctors. Thanks so much for your sharing and avacacy. I have donated and will continue to support the GCS Project. Thanks again.

  7. Hi Diane. This is Rita and just giving an update (9/14/17.). Have been off Taxol and Carboplatin, for four months. Surprisingly tumors (2) have continued to shrink a little even though off chemo. Doctor is puzzled by this and thinks maybe my own immune system is working to shrink them. Have you heard of anything like this before. Right now they are keeping me off, however it required CT scans often, which concerns me. Last month CA125 had gone down Fromm 16 to 14. Any information you might have about my situation, please let me know would love to hear from you.


    1. Hi Rita,
      Great news about the tumors. I hope your immune system has kicked in. That does make some sense. I was diagnosed with a small metastatic lesion to the rectus muscle about a year ago. I asked for a biopsy to determine if it was in fact carciosarcoma. Surprisingly, biopsy was negative for C/S but showed a large number of lymphocytes which suggested that my immune system came to the site and attacked the lesion. It is a guess but I choose to believe it.
      How often are you getting scanned? I am scanned every 3 months and continue to take chemo. My tumors have not progressed but have not retreated yet either. As you know, we have to be very vigalent with this beast.

      Take care,

  8. Hi Diane,
    I read your story and thought of myself. My pathology report came back saying I have a high-grade malignant epithelioid cell neoplasm of carcinosarcoma of the gyn orgin. I have a tumor in my uterus and the cancer has spread to my lungs. I am 49 years old. After going through 9 weeks of chemo, not much has changed. My doctor, my husband and I decided to continue to taxol/carbo combination for another 6 weeks and then another scan. If this does not work , off to the next treatment plan. You and the others have given me hope. Just knowing that people are working on a cure- makes me smile. I called to see if I could get an appointment with Dr. Birrer today. Due to the size of my tumor, my doctor is unable to remove it. Just knowing it is in me- scares me- this whole thing scares me. I am blessed to have a great support system with my husband and friends.
    Chris Sobczak

    1. Hello Chris,
      I am very sorry to hear about your diagnosis. This is a very serious disease but not hopeless. The fact that your tumor has not grown after 9 weeks of treatment is very positive. LIke you, I am not a surgical candidate, but I have been co-existing with my cancer for over 2 years. The cancer has not regressed but it has not progressed. I take a chemo pill everyday and receive an infusion of avastin very 3 weeks. That could change at any time and that is why we are supporting the clinical research for carcinosarcoma. That is where the cures will be found.

      This is a very scary diagnosis. It took me a good 6 months before I stopped thinking about it every single minute of the day. But now, when I become frightened, I stop and tell myself that I am alvie today and I feel pretty good so today is going to be a good day. WE all handle the stress in a different way. Thank you for sharing your experience. We are working hard to make sure that there will be clinical trials and treatments available in the near future. Stay in touch and stay well.

  9. How do we get a second opinion with Dr. Birrer (hope I spelled that correctly) please a number or contact.

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