Diane’s Story Update, March 2017

Part 2—Diane’s story update, March 2017:

 

It will soon 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 (Cytoxan) 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 research. My tissue is being used in the research.

 

More exciting, there was enough of my tissue to create a mouse model for study — a mouse that will hopefully grow the tumor so that researchers can test treatments in the lab. For more information about mouse models, please refer to the NIH’s article on Mouse Models for Cancer Research.  The authors explain that in mice, 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.” 

 

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 must 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 GCS Project Fund directly by clicking here. 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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Part 3—Diane’s story: An epilogue.

 

Diane died on March 15, 2018, almost 3 years after her initial diagnosis with ovarian carcinosarcoma. In those 3 years, she worked tirelessly to find a cure for this disease — the next “game-changing breakthrough.” She never lost hope—not for a minute—that a cure would be found. She knew that our funded research and the projects on the horizon would lead to amazing developments toward the cure for carcinosarcoma and that these discoveries likely would help other rare cancers. Incredibly, she managed to battle her disease while never losing sight of this mission.

 

Shortly after her diagnosis, Diane realized that although there were some websites offering support for women with carcinosarcoma, there was a critical void that needed to be filled. What was lacking was a place for women and their advocates to not only learn more about the disease, clinical trial opportunities and how to advocate for their medical needs, but more importantly, what was needed was a place—a community—to build support to fight for the cure. It was evident at her first meeting with Dr. Birrer at MGH that without funds there would be no research. The national organizations had not been successful in rallying research dollars for rare gynecologic cancers, so she would do what it takes.

 

Through the website she also provided critical support and education to the women and their families who contacted her. She was thoroughly committed to women with GCS and their families, promptly returning emails, offering support, guidance and instructing on self-advocacy.

 

She was focused on this mission and the fight for her life!

 

March 2017 to March 2018

 

Diane didn’t have a chance to update her story, and so we are adding the final chapter for her. We are certain she would have wanted this shared.

 

Spring 2017 was busy for Diane and The GCS Project with our first major fundraiser, a “Celebration for Life,” dedicated to Holly Dunn. It was a fabulous success and a chance to get to know Holly and her family and friends. It was also the beginning of a wonderful relationship with Missy Taylor, Holly’s spouse and currently our Vice President. Diane and her family and friends were well represented in Nashville, and the fundraiser contributed almost $40,000 to our research fund. Having this level of support inspired Diane.

 

You can read about the event on our Facebook page. https://www.facebook.com/media/set/?set=a.1915853645294581.1073741829.1792605547619392&type=1&l=0bf379d0ad

 

Spring and Summer of 2017— Diane and the tumor coexisted well during the spring and summer, with scans showing stable disease. She hiked almost daily, taking long walks in the mountains. Five-mile hikes were a norm for her! Her social calendar never slowed as she attended baby and bridal showers, weddings and other celebrations and found time to golf in her spare time, feeling so fortunate that she felt “good.” Never one to complain about her diagnosis, she decided her life would focus on seeking whatever brought her joy. She even named the mouse model at MGH, “Joy.” She and Roy traveled to Africa on a safari, had a close encounter with gorillas (“gentle giants”) and spent time in Ireland with family and friends, golfing, hiking and biking and seeking out Irish music. Never one to let her disease get in her way, she adapted and found joy. She switched from her favorite red wine to Cosmopolitans, which were easier on her mouth, which was feeling the effects of chemo. Stopping for a glass of red wine now became, “Let’s get a cocktail!”

 

 

Diane continued her medical care under Dr. Michael Birrer, and when Dr. Birrer assumed the position of Director of the Comprehensive Cancer Center at the University of Alabama at Birmingham (UAB), she traveled to Birmingham regularly for checkups. She was happy to hear that UAB would develop a clinic for women with GYN carcinosarcoma and focused her efforts on creating a Center of Excellence for gynecologic carcinosarcoma.

 

 

Late Fall 2017 brought bad news in the form of tumor growth—“mild disease progression” as she wrote on the forum. She realized this meant that the tumor was breaking through the current regimen of Cytoxan and Avastin, and it was time for a new attack. She was switched to Gemcitabine and Cisplatin, but her platelets plummeted as the drugs suppressed her bone marrow, and she reluctantly had to discontinue the treatment. She then began weekly Taxol with Avastin every 3 weeks. Diane rented Polar cold caps to preserve her hair, having lost it with the first round of Taxol in 2015. The cold caps were effective, but the repeat scans, unfortunately, showed mild disease progression again.

 

In early February, Diane and three board members flew to the University of Alabama at Birmingham (UAB) to meet with physician leaders and researchers (including Dr. Michael Birrer, Dr. Rebecca Arend and Dr. Warner Huh) as well as marketing staff and development staff at the Comprehensive Cancer Center to work out the details for a Center of Excellence in Carcinosarcoma. Although Diane had heavy concerns about her own health, she led every meeting, fully engaging her leadership skills, with typical clarity and purpose.

 

At this time also, Diane and her treatment team explored clinical trial options, and she decided to enroll in a study at UAB: A Study Exploring the Safety and Efficacy of INCAGN01949 in Combination With Immune Therapies in Advanced or Metastatic Malignancies. Enrolling in the clinical trial required a 28-day “washout” period—4 weeks without chemo—a fearful time without treatment. She met the eligibility requirements and hoped to begin in late February.

 

While waiting for the clinical trial to begin, in her characteristic way, she continued to enjoy life and spend time with family. She set out to climb Mt. Timpanogos in Utah with her sister and a friend. The mountain rises almost 12,000 feet above sea level and is a difficult climb for those with the best of health, but she persevered, even with low platelets. Because of conditions on the mountain, she couldn’t make it to the summit, but she met her personal goal and got to a place of beauty and peace.

 

Just days before heading to UAB for the clinical trial, she took two nieces on a visit to NYC, taking them shopping and to see Hamilton, which Diane, the history buff, thoroughly enjoyed. She was so happy to have this time with them.

 

She began the clinical trial on March 5, 2018, receiving her first infusion of the trial medications, but the aggressive disease quickly began a rapid acceleration, which the trial drugs could not control. She was brave and determined to not give in or give up, but she was too ill to continue in the trial and was hospitalized on March 12. She never received a second infusion. She died three days later surrounded by family after an extraordinary three years.

 

Diane admired those who were committed and fought hard for what was right. In her study was a framed quote by C. Hoppe:

 

“I hope that my achievements in life shall be these — that I will have fought for what was right and fair, that I will have risked for that which mattered and that I will have given help to those who were in need. That I will have left the earth a better place for what I have done and who I have been.”

 

We are committed to continuing this vital work to make her dream a reality.

 

 

 

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12 thoughts on “Diane’s Story Update, March 2017

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

  2. 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.
      Diane

  3. 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.

    Thanks,
    Rita

    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,
      Diane

  4. 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.

  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. 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.

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

  8. 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.

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

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