Well, I started the trial today and so far, no problems. It's just two little pills everyday and that's it. I sure hope these two little pills start doing something fast as I just received the official scan report today and it's not looking good for my back. Turns out, my T-9 through T-11 vertebrae are all eroding from the disease again. Not to mention, I have another new hot spot in that area which means that the Hodgkins is declaring all out war on the Thoracic area of my spine. It's not like the constant aching I used to have (which in a way is a good thing) although now when I make a wrong move, it (the pain) completely knocks the wind out of me (for instance, trying to sit up from a cushy couch or get up out of bed).
While I'm hopeful the Everolimus is going to stop this in it's tracks, it seems like I'm going to be really limited in what I can do now physically (again) and it bums me out to be honest. I just have to come up with some new summer hobbies and know I'll adjust...
Just in case anyone was wondering how the drug works, here's a brief summary:
"There was sound rationale to test the mTOR inhibitors in lymphoma," said principal investigator Thomas Witzig, MD, from the Mayo Clinic in Rochester, Minnesota. He explained to Medscape Oncology that mTOR kinase is a key regulator of the PI3K signal transduction pathway, which is important to the growth and survival of cancer cells.
RAD001 or Everolimus is an mTOR inhibitor.
I've also initiated the process of getting into a trial being conducted in Houston where they take my blood (if they can find EBV virus which supposedly 95% of the human population present) and grow killer T cells that are targeted to find Hodgkins cells. They do this by being attached to an antibody, CD30 which most Hodgkins cells contain. I think this trial is especially cool as it's using your bodies' natural defense mechanism (T cells) to kill off the disease, not toxic chemicals like chemo. The problem they've had in the past is the programmed T cells dying quickly floating freely in the blood. Now that Dr. Heslop is experimenting with attaching these T cells to the CD30 antibody, it takes the T cells directly to the cancer and in theory extending their life span. This is at least the way I understand it, I could be off but think I have the right concept. Needless to say, pretty cool stuff.
Apparently all of these new studies are sprouting up from the Human Genome project that was started in 1989 and finished in 2003. It was a collaborative worldwide effort between scientists and is already giving doctors and scientists like Dr. Bollard and Dr. Heslop the opportunity to experiment with these novel ideas how to fight cancer besides the old way of slashing and burning with chemo.
I'm glad (dubiously) to be part of history and hope that while contributing to science, I can get some relief over here!
I'm out for now, good night.
Chris
1 comment:
Chris I really believe with all my heart the EBV is at the heart of this ( especially refractive) Hodgkins' I have no medical reasoning just a mothers'gut instinct and if my Chris were a live I would be moving heaven and earth to find a way to get them to listen with the EBV a as source or a connection to this obscenity ... Best of luck Chris pulling for you ! Loraine
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