Ellen Matloff of (@mygenecounsel), Amy Byer Shainman (@Brcaresponder), and I had another #Hcchat last night where we discussed men and hereditary cancer syndromes in honor of Men’s Health Month. You may find the transcript along with many of the informative banners for the chat here: https://goo.gl/lfWrNG
One of the most important parts of that chat, which we wanted to bring attention to, is a study about men with the BRCA mutations, being conducted at Boston College by Dr. Hesse-Biber. For more information regarding this study, please click on this link: https://bostoncollegeaands.qualtrics.com/jfe/form/SV_2meMcRSndGrMxYE
#Hcchat was highly successful and managed to make almost 6 million impressions on Twitter thus far — just within the past 24 hours. We will be having another #Hcchat in the next 4-6 weeks, more details regarding the topic will be announced shortly.
In the meantime, I returned from Mayo about month ago and thankfully got another clean bill of health — all my scopes were clear, not a polyp to be found anywhere and my blood work came back perfect with the exception of my hormone levels. It took me a few days to appreciate the good news because my scanxiety was through the roof. My 2nd Mom came with me on this trip, and we actually had a lot of fun and have decided to make an annual pilgrimage out of it. I spent five days there this time because I had to see a dermatologist and speak to a gynecologist because my hormones are out of whack again. I’m on HRT but my blood work suggested that I am still not getting enough estrogen. Again I have found myself in fog of lethargy. I’m developing osteoporosis in the lumbar area of my spine and have managed to shrink 1.75 inches within the past two years. If I keep shrinking at this rate I’ll only be two feet tall when I die, oy vey! Yes, I’m thankful I’ve been able to take preemptive strikes again some Lynch cancers and all but people need to realize there are life-altering consequences to these surgeries, they are not to be minimized.
I went to ASCO in Chicago a couple of weeks ago; the most relevant piece of information for those of us with Lynch syndrome is that Johns Hopkins is working on a clinical trial using a tumor’s genetics to guide immunotherapy. Clinical benefits have been noted in cancer of the colon, uterus, stomach, prostate, duodenum, and bile ducts with those with advanced stages of Lynch syndrome related cancers. Here’s an article from The New York Times discussing the immunotherapy called Keytruda: http://www.nytimes.com/2015/05/30/business/new-class-of-drugs-shows-more-promise-in-treating-cancer.html?_r=0 . This is the clinical trial to watch; the issues are that this immunotherapy is not currently covered by insurance and is very expensive — hopefully these issues will change with time. I also had the privilege of meeting Deborah Anderson, The Chief Executive of Bowel Cancer UK — I look forward to some form of collaboration with her in the very near future.
In the meantime, I’m in the process of simplifying my life and moving to a town outside of Chicago where I’ve always wanted to live. I’m downsizing and relinquishing my responsibilities as a homeowner to spend more time doing things I have found tremendously meaningful — spending more time with my family and focusing on my advocacy efforts and non-profit. With havelynchsyndrome.com, I spend countless hours speaking to those who have been recently diagnosed with Lynch syndrome, helping them find resources needed to fill in the medical gaps, writing for this site, other blogs, Cure Today, writing for global oncology journals, doing podcasts, connecting with doctors, genetic counselors, patient advocates, and spending time working on #Hcchat with Amy and Ellen.
Please be sure to check out my articles on Cure Today: http://www.curetoday.com/community/georgia-hurst. I am a monthly contributor to them and write a lot about Lynch syndrome, hereditary cancer, genetic counseling, and genetic testing. I’m trying my best to get the word out about Lynch syndrome and it’s working — and one of the reasons why it’s working is because of the BRCA community. I have found them to be exceptionally supportive and helpful with my advocacy efforts and I now know why they have been so successful as a whole. They are smart, resourceful, support each other regardless of their differences, and are social media savvy — other advocates should take heed. So kudos to them for helping me get the word out about Lynch and other hereditary cancers. They don’t make distinctions between hereditary cancer syndromes — I am honored and flattered they have been so supportive, helpful, and inclusive — so thank you to the BRCA community! Infinite gratitude for all of your support.
Speaking of BRCA, the trailor for the movie Pink & Blue recently came out and I think it’s an amazing piece of art; no mud, no lotus. It will be out in the fall, cannot wait to see it. Check it out here: https://vimeo.com/128395888.