Very quiet

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    • #7778
      Brenda R
      Participant

      It seems that this group is very quiet. I would have thought more would post here. What is happening with the “clinical trial” that money was collected for?

    • #7787
      ann
      Participant

      Well, Brenda, I have started three responses to you, and then they disappear! I hope you are not getting them all!

      Thank you for your note! I, too, wish there was more interaction on this website. I know this cancer, treatments, and side-effects are overwhelming – at least that is the way I felt when I was diagnosed. I know people are at all different stages and dealing with all different responses to the treatments. It is an encouragement to me when people post and share their experiences. I appreciate learning through other peoples experiences. I am glad to have some basis for further treatments. I hope we can be encouragers for each other!

      I have not heard anything about the trial. Maybe someone in the administration can answer this part, or you could contact one of the doctors involved. It would be great to hear where they are in the process and what they have learned so far!

    • #7806
      Kathy
      Keymaster

      Hi Brenda and Ann,

      Thanks for asking about our efforts at The GCS Project. Recently, we had news from the researchers at Mass General and University of Alabama at Birmingham about the research project that we funded with our initial donation of over $300,000. The research teams have completed whole exome and transcriptome data analysis on

        133 tumor tissue samples

      ! They are now working to combine the 2 sets of data, which is a tedious process. We expect to have the final analysis by summer 2019.

      All of this work is directed toward finding a cure for carcinosarcoma. Science needs to have a greater understanding of the tumor, which we hope this first project will unveil.

      Regarding a clinical trial – While we are not funding a clinical trial at this time, we are optimistic that the research that we have funded and future research that we hope to be involved in will open a window for treatments. We have learned that clinical trials are extremely expensive, and because of this, they are generally funded by the pharmaceutical company investigating the drug used in the study and/or federal grants.

      It is hard to predict, but looking ahead, our role in clinical trials may be supporting other aspects of a trial, as we could not afford to run an entire trial. As anyone who has used chemotherapy or immunotherapy knows, the drugs are thousands of dollars a dose. We will take our next steps under the guidance of our expert physicians who are there to help us as we make our next moves to find a cure.

      Just an fyi – I wrote about the research updates on a Facebook post in October and included a link to more detailed info on the website (under the GCS Research tab). You can find it here: http://gcsproject.org/gcs-research-progress/

      If you are interested in following us on Facebook, the link is on the bottom of this page.

      Finally, our web developer is placing a notice on the front page of the website to make it easier to see new information. I hope that will be completed in a day or two.

      All the best,
      Kathy Wilt

    • #10042
      rickas
      Participant

      Hi. My wife was diagnosed with MMMT Ovarian Cancer in February 2017. Full Hysterectomy followed by 6 mos of Carboplatin/Taxol. Cancer free for 8 mos after completion of chemo. In late 2018 her regularly scheduled CT showed more cancer on her spleen, which was removed followed up by another 6 mos of carboplatin/Doxil. After completion of round two, her doctor, Dr. Oliver Dorigo of Stanford University Hospital Started her on a new medicine called Nariparib. It is a PARP inhibitor which if it works as we hope, turns of the self repairing strand of the cancer DNA causing any remaining cancers to die, and any new cancers to be unable to grow and also die. She has been on the PARP inhibitor for 5 mos now, and has had some reactions to the meds requiring modifications of the dosage until they find the right one. 300mg caused her platelets to crash low enough that she needed to be transfused, 200mg allowed her platelets to recover, but her red blood and hemoglobin started to fall to the point of needing another transfusion to stabilize. Now she is on 100mg dosage daily and seems so far to be tolerating it. Dr Dorigo has a few patients on PARP who are doing quite well (one is at the five year mark). however they have carcinoma’s, not the carcino-sarcoma that MMMT is. Has anyone else heard of this type of treatment for MMMT? Any known results to date? I’m not sure if this is the right place to post this. If not could the moderator please move it to where it should be? Thanks

      Rick and Diana Stein

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