Hello All!
I've just finished up my first course of Vidaza, a drug that is supposed to reduce the number of immature white blood cells in my marrow and improve my blood counts as I move toward a stem cell transplant.
To recap, for those who haven't found my
Campath or
Danazol archives, I was diagnosed with low-risk MDS in March of 2010, with dysplasia in all cell lines, a duplication on the long arm of Chromosome 1, Trisomy 8, and HLA-15. All of that, combined with my relatively young age at diagnosis (53) made me a good candidate for immunosuppressants. I entered a trial of Campath at NIH in November 2010, but failed to respond.
A year later, I entered the Danazol trial at NIH, because they found a mutation in my TERT gene and extremely short telomeres. The Danazol worked well for a few years. But, after a (possibly unrelated) bout of acute necrotic pancreatitis and some heavy duty prednisone therapy, my need for bi-weekly RBC transfusions returned. A new biopsy found 15 percent blasts and progression to acute myeloid leukemia, landing me with an RAEB-2, high-risk diagnosis.
The folks at NIH and my local hematologist agreed that the only reasonable course of action was to ditch the Danazol in favor of Vidaza and to see a transplant specialist real quick.
As I mentioned at the outset, I have finished up my first round of seven Vidaza injections, given Monday-Friday of one week and Monday and Tuesday of the next. That is repeated in 21 days.
So far, the Vidaza has not killed me.
Important Note on Medical Terminology: When doctors say a drug is "well-tolerated" that means it is "unlikely to kill you outright." That does not mean it will all be milk and cookies.
Actually, the Vidaza has not been all that bad. It is not a harsh cyto-toxic (cell-killing) chemotherapy. So my hair is not falling out. It did, in fact produce three days of diarrhea (some folks evidently have constipation instead) which led to some dehydration, possible electrolyte depletion, and one day (#7) when I couldn't get out of bed until 3:30pm. On that day, it also produced notable brain fog.
The Vidaza IV is, in my cancer center, preceded by a dose of Zofran, to fight nausea, and dexamethasone, a steroid which is also used to combat possible Vidaza side effects. Based on my experience with Predisone while recovering from a nasty batch of pyoderma gangrenosum, I know I am sensitive to steroids. I have experienced some mania, euphoria, and emotionalism, as well as increased near-sightedness, since starting the dexa. And I also have significantly increased appetite. I have little doubt that I will also experience a considerable let-down once it is stopped.
It is quite possible that the Vidaza side effects -- particularly in terms of decreased blood counts -- will actually get worse over the next couple of weeks, as the drug goes to work on my marrow.
I do not currently understand how Vidaza works. I plan to find out and share it with you when I understand it.
I have an appointment with Dr. Mitchell Horwitz at DukeHealth on Thursday to discuss transplant. I hope that appointment will help define the timeframe of my future. I have a business to unwind, financial plans to make, family support to organize, and a host of other little details to work out.