Talking Telomeres

[Greg H]

Hey DanL!

Thanks for that advice and for sharing some details about your experience.

In fact, I begin Vidaza this afternoon, as a bridge to transplant. My local Hem/Onc, as well as the folks at NIH, recommended that course of action -- possibly because my blasts are already at 15%, so I could slide over into AML before we get the transplant set up.

I'm curious about your experience with Vidaza, though I know it was only two months. Did you find that it totally wiped you out, or were you able to continue working while being treated with the drug?

I'll know soon enough, I suppose, how it affects me; but the experience of some folks that I have read about indicated that they were pretty wiped in weeks two and three.

Thanks!

Greg

[bailie]

Greg, your path seems similarly to mine. I had 15-19 percent blasts when after diagnosis. Immediately I started the first of eight cycles of Vidaza in preparation for transplant. After two cycles of Vidaza my counts were heading in the right direction. The numbers continued to improve until transplant while getting ready.

I felt fine during those eight cycles (seven consecutive days of Vidaza and 21 days off). I golfed and walked the six mile course right up until the week of the SCT. Often I would golf right after the SubQ shots. By about Day six of each cycle I slowed down a little. I never experienced nausea or much of anything significant. The most important effect for me was making sure that constipation did not become a problem. The anti-nausea pills will cause constipation and it is very important not to ignore. Get your MiraLax ready. I started with it the day before starting each cycle.
I wish you the best.

[Greg H]

Baille,

Thanks for that advice. I've was on oxycodone for the pancreatitis, and that also causes constipation. So I'll get myself prepared to combat that with the Zofran they are giving me with each dose of Vidaza.

Thanks!

Greg

[DanL]

Greg,

I had 2 cycles pre-transplant and 6 post. My pattern was that I would be fine for the first 2 weeks, and at about day 13-16 I would see my WBC and platelets crash with minimal impact on RbC/HGB. I would get really tired for a couple of days, and then recovery started. Overall, it was extremely tolerable. The constipation thing was not a big deal for me, and for the post-transplant I was on about 200mg of oxycontin for part of the time, so i was really testing my body's limits for drug-induced bowel issues. I did tend to eat a lot of the clementine oranges and cooked dark greens during this time though.

Good luck with the treatment. May it be effective and easy.

Dan