This past weekend I had the honor of being a bridesmaid in my oldest friend Molly’s wedding. My husband and I traveled to Atlanta, for a weekend of wedding festivities and reconnecting with friends.
On Saturday morning, rather than getting my hair and make up done with the rest of the bridesmaids, I was able to attend the MACAG support group meeting at the Wellness-Community, Atlanta Northside. It was such an honor to be able to speak with patients and their caregivers as part of a regularly scheduled meeting and it was a wonderful coincidence that the group was meeting the same weekend that I would be in Atlanta. I hope to travel to more and more support groups as the year goes on. Email me today, lauren.erb@caringforcarcinoid.org, and suggest support groups for me to visit!
I was struck by the conviction and dedication that each member of the group had. It was inspirational to see so many people come together and support one another. People offered their own experiences and information to inform each of the other attendees. I found the meeting to be very informative for me as I sought to gain a better understanding of the types of questions and the treatment developments that mattered most to this group. I am very grateful to the patients and caregivers that opened up and shared their experiences with me.
It was great for me to see that this group was truly taking ownership of their treatment. It was clear that they were asking the tough questions and demanding answers and accountability from their physicians. This was not a group that was sitting by the way side. Rather this was an extremely dynamic group of patients drawing upon the experience of experts from Boston to Texas to international locations.
We spoke about one of CFCF’s exciting new research projects, The Caring for Carcinoid Foundation Neuroendocrine Tumor Bioconsortium, and how this project will enable scientists to characterize specific disease pathways, uncover genetic and environmental indicators of disease, identify novel drug targets and tailor treatment programs to the needs of patients. The collaboration will link the biobanks at Dana-Farber Cancer Institute (MA), MD Anderson (TX), MGH (MA), Memorial Sloan Kettering Cancer Center (NY), and Stanford (CA). It was alarming to learn that two of patients also had a family member diagnosed with a related NET. This highlights the need for further research linking tissue samples with patient information in order to track down the mutations that lead to NETs. Scientists can eventually identify if these mutations are hereditary or sporadic.
We spoke about treatment options that may improve patient quality of life and the promise of studies like a recent MGMT study. This study suggests that subgroups of patients with specific genetic mutations respond to certain therapies. This study offers bold hope for the future of targeted therapies.
MGMT is a DNA repair enzyme that is often overexpressed in certain cancers. In this study, Dr. Kulke and his team report that pancreatic neuroendocrine tumors which were deficient in MGMT were sensitive to temozolomide-based therapy.
To read the article from "Clinical Cancer Research" click here.
To learn more about this treatment option, please call us at 857-222-5492.
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