[Angie W.]

Dottie –
We were very surprised at the dramatic decrease also. I had been praying for ‘same or lower blasts’. Wow!! Had just wanted the decitabine to keep AML at bay.

He had MDS for a year before progressing to AML (M-2).

He is now able to participate in our Leukemia Society’s Light the Night Walk. And go with us on our annual family vacation to the beach. Very, very thankful.

[Angie W.]

Hi –
My dad has completed his 3rd cycle of Decitabine. In July, his blasts were 70%. Yesterday we got the results from the BMB that they are now 5%! He receives transfusions once or twice a week. Platelets are exceptionally low. But he is feeling better than he has felt in a long time. We are very happy with the results that we’re seeing with the Decitabine. (He is admitted to the hospital for 4 days to receive this chemo. Has a porta-cath)

[Angie W.]

Dad went to the doctor today for CBC with bags packed to go directly to the hospital to begin chemo. However, his WBC has come down from 95,000 to 90,000. (On Tuesday, they increased his dosage of hydrea). So, they sent him home! He’ll return on Monday and see if counts are still declining. If they are, this could buy him some time before he begins chemo. Don’t know how long – could be weeks, months, a year…??? However, it has at least bought us the weekend to be together regardless of what Monday brings. That was very important to us as our young children will be able to see him before he goes to the hospital (or maybe not!!) on Monday.
So apparently, we just need a little more Hydrea and a little more time for it to kick in.

It has ended up being a better day than we thought. And in this uncertain day to day battle that we fight, that is a blessing!!!

[Angie W.]

Dad’s WBC today was 95,000. I had been given some wrong info earlier… five weeks ago they were 2,000. Then last Thursday 79,000.

He has been taking 2 pills twice a day. Doctor changed today to 8 pills a day (not sure how many and how often…).

More bloodwork on Friday.

If the Hydrea is going to do ANYTHING, would we see something within a week, especially with increased dosage.

I thought the counts today would be a tiny bit lower. Not a huge amount higher.

It’s all happening very quickly.

[Angie W.]

Thanks to all for your thoughts and input. There is comfort in knowing that we are not alone in this battle.

Suzanne, I appreciate your comments on the chemo. I’ll be anxious to hear what the doctor has to say about this option. I know there are risks to that too…just very scary not to know whether it would be a ‘sure thing’. I’m sure his overall good health would be in his favor should we go this route.

[Angie W.]

Forgot to mention that his WBC is currently 79,000 (and 5 weeks ago had been 26,000). If that is relative to a response from Hydrea.

[Angie W.]

The congressman was Robert Matsui (D-California). Shirley Temple Black’s husband also died of MDS in August 2005.

[Angie W.]

Jody, thanks for the info. We’re still fairly new to this MDS game and I’m just uncertain what we’re dealing with. He’s actually on Myrac not Mytac…At this point, he seems to be responding to it. He is probably not staying off of his leg as much as he should. Hard to get him to sit still. Thanks again.

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