My mother, who is in India, was diagnosed at 68 yrs with MMMT of Uterus in Dec 2014 after complaining of bloating and difficulty breathing, ultrasound revealed ascitis and further testing found it to be carcinosarcoma originating from uterus.
She had a complete hysterectomy (BAH) in March, 2015 in India. She was given 4 rounds of Chemo Cabroplatin before hysterectomy and 2 rounds after.
She was disease free for about 9-10 months, during which, she visited US and we sought a second opinion (Dr. Siobhan Kehoe at UT Southwestern) about the treatment given in India. Unfortunately, since it was an R1 surgery, in Mar 2016, there was a relapse, lesions were observed on the Liver and a Lymph node.She was given Gem+ Carbo-6 rounds of chemo, which did not remove lesions completely.
The doctors decided in Nov. 2016 that it’s better for her to take oral hormonal medicine hence prescribed Letrozole 2.5mg orally. Jan 2017, CT scan shows focal lesion in right lobe of liver- subcapsular/extracapsular, paracaval lymph node and few tiny mesenteric nodules in pelvis-antero-medial to external iliac vessels.
Post CT in Aug 2017, looking at minimal progression they suggested 3rd round of Chemo but prior to 3rd chemo cycle, she contracted a viral infection so we consulted local Oncologist and looking at her condition (she had viral infection) at the time, he said that we could defer the treatment for a month. After recovery from viral, she complained about lower left abdominal pain and also constipation.
As per the advise of local Oncologist, an ultrasound was ordered. Accordingly Dr has given new prescription of Cisplatin (50mg) + Palzen + Irinocam (100mg) . This week, she will be completing 16 injections that were given weekly.
All through the chemo, she has had nausea, hair loss, headaches, weakness etc and has faced it bravely.
If you are still with me...my concern now is- what if this chemo didn't help her ?
Another oncologist suggested to get a Foundation one gene test so that she can be a candidate for immunotherapy as chemo is causing lot of side effects.
She has even tried high vitamin C, ozone therapy- which I believe helped to an extent and improved the quality of life.
I've been to find if anyone had any experience with any targeted therapy for treatment of this insidious cancer.
Any help will be appreciated.
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 !!!
May you rest in eternal peace, as someone with the strong belief in the theory of karma, I know you have accumulated enough for several births by helping countless families struggling with this insidious MMMT.
Your legacy lives on with this project.
God bless your family.
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