As a survivor of my bouts with breast cancer, it just makes sense to me to participate in any research where I can contribute to the body of knowledge about breast cancer, and hopefully to change the future for the better.
I’ve kind of participated in Kaiser Permanente’s long term survivorship study. I’m not all that good about filling in all of the paperwork and doing the body measurements, but I do what I can. I’ve also enrolled as a participant in Dr. Susan Love’s Army of Women. I’m one of many women who have registered and provided some health information to be contacted for breast cancer research. One of the studies I did tested for the KRAS variant, which may become a significant marker for breast and ovarian cancers.
I recently found a new study in a local breast cancer support newsletter, looking for women who had Taxanes or platinum chemo regimens and who subsequently developed chemo-induced neuropathy for a study run out of UC San Francisco. Since I qualified on every level (Taxol+Carboplatin=>significant neuropathy), I contacted them and was invited up to San Francisco for a two hour testing session.
The testing was interesting. There was a lot of poking at my hands, legs and feet, including determining if I could tell the difference between a cold or a room temperature touch, if a sharp object felt sharp or just registered as pressure, if I could register vibrations at various sites, and if I could tell when they touched me with a series of fine to coarse filaments – all with my eyes closed. I also had to try to walk a straight line, turn in circles, and in one particularly difficult exercise, move my head from right to left to a ticking beat while walking in a straight line.
I failed a lot of the tests. Or at least, I had difficulty completing the tasks or feeling the stimuli. At least they were finally able to get some blood out of me after several attempts.
The first phase is comparing women with neuropathy with women without it. There may be a biological marker. I’m told that they are still looking for women who have been through these chemos who did not develop neuropathy. They pay $200 if you’re interested!
I’m halfway through phase 2 of the study, where they look at the effectiveness of a treatment on foot neuropathy. I’ll update next week with how that study went. Maybe they’ll even let me take a picture of the apparatus. But for now, here’s a photo of the view from the UCSF parking structure on a beautiful California spring day. If you squint, you can even see the Golden Gate Bridge in the distance.