An Overview from Sammy

Well, as many of our friends and family know, Sammy started chemo on Monday.  Here's a quick overview (written by Sammy, it it were by me it would not be brief!) of what has taken place since his MS diagnosis about 18 months ago.  Additions by me are in parenthesis =).

In April of 2009 I was diagnosed with multiple sclerosis, and in May of 2009 I began taking Rebif injections. Rebif is a interferon beta-1a subcutaneous injection that comes as a solution to inject subcutaneously (under the skin) three times a week. Basically, it is like injecting your body with the flu so your immune system attacks it instead of attacking your central nervous system. During my follow up MRI in September of 2009, the doctors noticed that the Rebif wasn't working like it was supposed to. At this time the doctor suggested I start taking a once a month IV drug called Tysabri. However, I decided not to take this drug due to the fact it had an FDA "black box" label. The drug has also been associated with PML(a deadly brain virus) and that wasn't a risk I was wanting to take at that time.

I then began looking at other multiple sclerosis doctors to get a second opinion. I was lucky enough to get an appointment at the medical center in Houston, TX next to MD Anderson (The same doctor's office that country singer Clay Walker goes to for his MS). The doctors there advised me not to start the Tysabri infusions (for reasons we knew, and for reasons we didn't know!), but to take a week of IV steroids and continue with the Rebif injections. They also advised me it would be beneficial to try an experimental drug called alemtuzumab. However, they would need special permission from my insurance, because this drug wasn't FDA approved for treating MS and had only been approved for treating leukemia. My insurance at this time was Aetna. So we began the approval process in November of 2009 and Aetna rejected the possibility of me getting alemtuzumab in January of this year.  (At the time the doctors in Texas told us that the only doctor in the country that was able to get this medicine approved by insurance was in Knoxville, TN!)

In May of this year we moved from Louisville, KY back to Knoxville, TN. During this transition I talked with the doctors in Texas about the doctor in Knoxville that could get alemtuzumab approved.  Dr. Sybil Wray has been such a blessing!  She is actually part of the ten year trial that has been working with Cambridge on getting the alemtuzumab FDA approved for MS, which is expected to happen in March of 2011. She was able to get the treatment approved through Cigna in one week at the beginning of October.  I began daily IV infusions this week on Monday, Nov. 29. These infusions will basically shut down my immune system and allow it to reboot itself. They are hoping that the T and B cells grow back without any memory of the disease and will not continue to attack my CNS.

For more on the chemo treatment Sammy is taking:
http://en.wikipedia.org/wiki/Alemtuzumab

I'll write an update tomorrow on Sammy's treatment has gone this week!  Thanks for all the prayers =).