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.