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Dec 9, 2019 11:50PM
I have participated in several studies and a vaccine trial since diagnosis. The first was a study conducted by the School of Nursing and Moffitt Cancer Center and sought to quantify whether mindfulness and meditation could reduce stress hormones. The were two arms - one arm that attended classes and were taught mindfulness techniques for six weeks, and the control arm which did not. Both arms had blood and saliva tested to measure cortisol and inflammatory markers, as well as documenting state of mind through questionnaires and subject reports. I was in the arm that attended classes, and found that I have used the teachings as I have proceeded through rather extended treatment. This trial took place right at the end of chemo, but I still had the remainder of the year of Herceptin, a recent diagnosis of lymphedema, and a number of reconstructive surgeries yet to go, so it was very useful for me as an individual to learn ways to mitigate stress as complications arose. Here is the trial and a summary:
I also participated in a Phase II vaccine trial aimed at Her2+ recurrence prevention. This trial was not local, so I did have to travel at my own expense, but I was willing to do so to potentially derive personal benefit, and to advance the science and help to possibly bring a vaccine to the market. I had previously lived in the Washington, DC area and had a number of friends who were very willing to help by having me stay with them, and my college aged son lived there at the time also. I worked the airline miles system, and got some inexpensive flights. I was fortunate enough to have excellent insurance during active treatment so had little out of pocket expense, I felt like this was not only worth doing, but also worth the cost. I too was inspired by the people who came before me and paved the way for use of Herceptin, and wanted to contribute in a constructive way. I traveled from Tampa FL to Washington, DC - a total of 7 trips in the first 6 months - one consult for suitability, physical exam and consent, and six series of injections. I then returned 4 times a year for boosters and labs, for a two year period. Subsequently I was followed by phone for the remaining two years. My local oncologist supplied notes from my routine follow-ups with him. This trial was interesting because two vaccines were being tested, and both had control arms. In each group, roughly half received the vaccine plus an injection of GM-CSF (similar to Neulasta), the control group only received the GM-CSF injections. The vaccine arm enrollment was determined by tissue typing, as is done for organ transplant. If you were one tissue type (A2+) you were relegated to a particular vaccine - the GP2 vaccine - which was the arm I was in, the other tissue type (A2-) received the other vaccine - which was AE-37. This was a blind study so there was no way to know whether you were in the control arm or the vaccine arm, but at the five year point I was informed that I did receive the GP2 vaccine. I knew I would be in the GP2 arm because I knew in advance I was A2+ thanks to a good friend who is a histopathological tech for the organ transplant folks here in Tampa. She drew my blood and ran the typing for me. The linked summary was very positive about the potential for risk reduction with the GP2 vaccine, it is a bit frustrating that it appears no closer to becoming available. I believe there were some issues with linking the two vaccines together in a common trial with different pharma companies, and differing results from the trial. Here is a link and summary:
I have also participated in a number of studies through Dr. Susan Love's Army of Women. Studies included satisfaction with reconstruction, the reFLECT study which measured physical activity, quality of life, and cognition, BrainBaseline which was another cognition study, the MyEnvironment study, and a number of questionnaires to support enrollment in the organization.
BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018.
9/27/2010, DCIS, Stage 0, Grade 3
9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)