S-Farnesylthiosalicylic Acid Drug Trial Part I

Well this is long overdue. I have been slacking in posting here for no particular reason other than just haven't felt like it, must be the heat. Its been requested that I share what its like being in the FTS drug trial so will start summarizing it today. But what I really want to write about is xenoestrogens, hydrogenated oils, pesticides in our environment and food(!), estrogen dominance, the importance of sunshine and vitamin D, and how all these things and more add up to DNA mutations that lead to cancer and in the case of NF2, well we are born halfway there so it makes sense to be diligent with keeping toxins low and your immune system high. I could go on and on. And will, another time.

I found out about MD Anderson allowing NF2er's into the FTS trial last year. The catch was to
qualify (FDA regulations, not MDA' s) one must have a malignant tumor. Well I'm not exactly cancer ridden but NF2 has had its effects with maybe the worse being the ependymomas in my
C-spine. These tumors are low grade cancer anyway you look at, they supposedly aren't metastatic according to NF2 researchers, or are they? Another topic for another day. So it was this that got my foot in the door.

After several email communications regarding basics like my history and medical insurance approval I had an appointment set for early December 2006 for an evaluation. They said be prepared to stay up to two weeks. Good thing I did prepare, for it took the whole two weeks.

It was quite awe-inspiring arriving at MDA that December morning, the whole Texas Medical Center which its a part of is blocks and blocks of buildings, quite daunting if traveling alone which fortunately I wasn't. Once inside we found our way to the 10th floor to the 'Clinical Trials for Targeted Therapy' clinic. And even though this was my first exposure to so many people in various states of cancer it was exhilarating because for once I was seeing a doctor about a possible TREATMENT to help NF2, possibly SHRINK tumors in time, not the standard doom and gloom and fatalistic attitude that is so common in any doctor appointment regarding NF2 where the only options are 1) surgery -- which always takes something away and the more you have the worse your condition becomes 2) radiation -- with no proven track record and similar risks, or 3) watch and wait. Wait for what? Well for you to deteriorate more of course! This is not to bash doctors who treat people with NF2, the surgeons and radiologists do their best and some exceptionally well. But the body can only withstand so much . Most N2er's are eventually deafened, have horrible balance, facial paralysis, paralyzed limbs, fingers and toes, chronic fatigue. In even more severe cases as if that isn't severe enough, feeding tubes, wheel chairs, nursing homes, blindness (on top of deafness) and death. And speaking of facial paralysis. Can you think of anything more insulting than being beaten up with surgeries, deafened then NF2 gets one last jab in and takes your smile. Your SMILE for heavens sake! But I digress.

Anyway, upon arrival we were escorted into a room where was given packets of info about MDA services, introduced to my patient advocate, and set up CART for the doctor appointment portion. MDA has a language department who sets up whatever interpreter a person might need. In my case, real time text translation. Meeting with Dr. Kurzrock and a whole team it was explained to me what to expect and that over next two weeks would need 4 MRI's, a full body PET and CT scan, and they needed pathology reports from my past surgeries to verify malignancy. For once I felt glad that I had the dreaded ependymomas. Part II coming soon. (Promise) Oh, and in case you are wondering, 8 months on trial and no growth.