Zarnestra to Dacogen

[Jack_dup1]

After 18 months on Zarnesta, blasts started to increase to 14.4%. Started Dacogen Monday 4/28/65 (my 65th birthday). 45mg, 5 days, 3 weeks off, one more cycle, then BMB. My only advantage is my WBC are 24, Neut. 15.9, AND 1587. I went to dinner last night to celebrate birthday, ate to much cake, spent the rest of the night giving it back to the porcelain throne, it was pretty rough. Feel better tonight after second day, have to see what tonight brings. I was diagnosed exactly 60 months ago on my 60th birthday. that was when I received the dreaded fable of 10 to 60 months to survive. I can’t say it has all been easy, but I have not given up.
I am constantly on 02, although they have no idea why, had every test including 6 ct scans and lungs show no problems.
Jack

[Mary4Mike]

Jack,

First off, HAPPY BIRTHDAY!!!!! (sorry to hear about the cake episode, hope things went better tonight) Usually with Dacogen, you will feel your worst at 10 to 14 days after treatment.

Is the 02 for shortness of breath? Does it really seem to relieve it?

Again, HAPPY BIRTHDAY, and may you have many, many more. No, it isn’t easy, but you have to give it your best!

[Russ P.]

Jack,
You started dacogen the same day I started my 8th round. The 2 previous rounds were at 30mg which were easier on me but let my WBC climb to 63. Now at 40 mg and hope it will get the WBC down. Keep us posted how your doing – on my 3rd day I experience a lot of stomach rumbling and gas. Looked like the zarnestra kept your WBC down.
Happy belated birthday and blessings,
Russ

[Jack_dup1]

Russ- I considered the Zarnestra very successful, although they said I had the best response of all on the trial and lasted the longest. I wish I would have started it earlier, it may have prevented my liver and spleen problems, five years ago there was not much available. The disease has away of eventually finding a flaw in the drugs and going after it.

Mary- the O2 is for shortness of breath and the o2 definitely helps. I have an o2/pulse monitor and discovered my O2% drops down into the 80’s and usually coincides with the shortness of breath. At night my O2% sometimes drops into the 60’s/70’s. The O2 prevents this. My pulmonary function test are low normal, no apparent lung damage or disease. I’m having some bad memory problems lately and believe it is lack of O2. Have a terrible time finishing a thought. It started with the O2 problem. The 02 problem is not consistent. It comes and goes.

Jack S.

[Zoe]

Jack,

Happy Birthday! Maybe the leftovers will treat you better.

I wonder if your RBC’s, even if they are normal in range, are not consistantly carrying the O2 correctly? I know I have days when I am just exhausted, but my hgb is in the mid to high 10’s with Aranesp. I feel guilty and keep telling myself I should feel fine with that hgb, but it isn’t always true.

Zoe

[Jack_dup1]

Zoe,
The strange thing is that my Hbg has always been a stable 15, or was. It is dropping now due to the Dacogen. It is now 11.8 and my breathing is actually better as well as my O2%. In my case I don’t think one has to do with the other. I am going to see a cardiologist on Thurs.
My whites have dropped from 24 to 1.7. My plt dropped from 71 to 16 and I had my first plt tx yesterday, this is my second week after the first round of treatment.
Jack

[Zoe]

Jack,

Good luck with both the Dacogen and the cardiologist. Keep us informed.

Zoe

[jaxem]

jack
counts after dacogen sound normal. interesting about your mental issues. my wife is having the same problems ie finishing thoughts, speaking slower, not having an aptitude to read when she was always a voracious reader. she’s seen a cardiologist for about 2 years now for congestive heart failure brought on by the chemos she’s had. make sure they do an echo test to check the heart’s ejection fraction. her blood-oxy level runs 97-100% (normal)but her ejection fraction is currently at 20% following clofarabine. 40% is normal for older adults and I’m pointing my finger at that for her mental issues.

[Jack_dup1]

I had an echo and the EF was 55%, everything looked normal, will have a stress test on the 19th. So, I have a normal heart, normal lungs, but suck on O2 all night. I used to do repair work and wish I could have told the customer that I had no idea what the problem was, nor how to fix it, but here is the bill for $500.00
Jack S

[Zoe]

“I used to do repair work and wish I could have told the customer that I had no idea what the problem was, nor how to fix it, but here is the bill for $500.00”

How very true :^) I went through the same thing. EKG, echo, etc. Found I had mild tricuspid and mitral regurgitation. From what I see on-line, it is not really anything to worry about, but now I have to get an echo annually. Thankfully ? my insurance is now into the catastrophic category and they pay 100%. For what it is worth, my pulmonary fuction tests were just a hair below normal.

Glad your heart is OK, hope they find the cause soon.

Zoe

[Jack_dup1]

I will start 2nd rd. of Dacogen on Tues. Before the first session my platelets were 71, 16, plt tx, 17, 18, 70, then 2 days later 191. Reds are 12, whited dropped from high 20’s to 1.07, then 1.60.1.70. 2.07. I have no complaints.
I am having some lung problems, sort of., shortness of breath, and low O2 saturation.
regards,
Jack Saffell

[Author]

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