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Reply To: Any experience with Immunotherapy for MMMT

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#4797
Diane Redington
Keymaster

Thank you for sharing your story. Your mother has been through a lot. Is she now in India or the US? How is she feeling? The reality for most of us with GCS is that the current chemotherapies either work for a short time or do not work at all. Eventually, the cancer finds a way around the immune system. However, we must continue to use the existing therapies until we can find one that is effective. New and effective treatments will only come with research and clinical trials. No Research – No Cures.

I believe that the Foundation One testing can be very useful in identifying some actionable mutations. If your mother is fortunate enough to have multiple mutations, the likelihood is greater that there may be an immunotherapy that may be effective. The more mutations, the better. Fortunately, uterine cancers including carcinosarcoma tend to have more mutations than ovarian which is a good thing. For me, Foundation One found a low mutational burden which means fewer targets and fewer options.

I think our best chance is Clinical Trials. Trials for GCS patients are few and far between. I think it is really important to work with physicians at major cancer centers who are aware of trial opportunities that could be a good match for your mother. I am entering a clinical trial at the University of Alabama at Birmingham under the direction of Dr. Michael Birrer. They do specialize in GCS at UAB and in addition to the trial that I am scheduled to participate, UAB is launching several other clinical trials for carcinosarcoma. We will report on each trial as it becomes available.

Some physicians may choose to use FDA Approved Immunotherapies off label for GCS patients. We do not have any data on off label use but physicians who treat GCS patients will be knowledgable about options.

It sounds like you are pleased with your mother’s treatment team. However, do not hesitate to obtain another opinion from a Major Cancer Center with GCS experience and knowledge of clinical trials.

I hope this is helpful. Sending your mother lots of positive thoughts. Though this is a very serious cancer, it is not hopeless. The more stories we share, the more information we have to take this cancer down.

Please let me know if we can be of help.

Thank you,
Diane