[frank]

thanks everyone.

they finally identified the bugs, it was staph infection(in blood stream), it was introduced by the pick-line wound during the operation. so i may have to stay a little longer for antibiotic, but it was curable… i will have anyother test today to make sure its gone, otherwise they may have to pull my pick-line off.

there several lessons i learned from this accident.
1. I should put the pice line before my Vidaza, since i have to have the blood transfusion, and the pick-line and med-port definitly needed, since i really hate medicine and all the extra things, i refused to have one until the chemo, then the vien is so fragile…
2. If someone have IPASS lower than 2, and belong to RARS, and WBC, PLT are not high enough(WBC 3.0, PLT 140 for me), should think it carefully, the side effect may be worse than the disease. If consider the outcome(20% responce rate), maybe should keep the current treatment unless it progress quick.
3. whenever take the chemo, pays more attention on the blood counts, it may kill you even you don’t know. Doctor is more important here…

i have to wait 2 more weeks to start my next vidaza treatment.

hope my post can help someone.

Frank

[frank]

good news for everyone here…

Frank

[frank]

Thanks everyone.

yes, i discussed with my doctor, i decide to continue the treatment, but may really cautious on the side effect, but it will wait for a while since this accident.

for whatever the reason, i do want to post all my experience for the vidaza treatment, it may help others, and i always think if the site have a thread on the trial or drug experience, it may more helpful for new commers.

my temperature finally got down, and my WBC is still under 2.0, but it seems i am getting batter now.

Frank

[frank]

thank for everyone’s concern…

doctor is definitly sure there are something in my blood stream, which may get in through the pick-line(which they put it one last Tuesday.). i still have 102 degree fever, hope it can be brought down soon. they will be sure on what kind of virus by tomorrow, and before then they only hope it is not a strong virus.

But from my experience for the Vidaza, i really hope everyone who took it pays more attention on it. I was on a very close looked by my doctor(who think i should delay the treatment) during the time i took, but this kind of things still happened.

i don’t know i will continue the treatment or not, doctors from Johns Hopkins still think i should go forward, but it was a really scared experience.

Frank

[frank]

Suzanne,
thank you for asking.

i havn’t had chance to be in Duke, i am on Vidaza right now, and i think i may have to do the Duke things soon.
i start the vidaza 1 month ago(since i felt my health is good enough, and after spring time, no flu; my twins are little better now), i really want to see some result from it. It was recommanded from JHU and my doctors, but somehow i do feel maybe i should wait(until the twin are 2 years old). the result from it was not so good, just like what i said, since i have two little girls, and i am the premire care-giver, it will be a real difficult for us to handle the case if i have to stay in hospital often. Hope it really help me…

i asked for the vidaza’s responce rate for RARS patients in other post, no body responce currently…

Frank

[frank]

As a young child father, i think the best way is maitaining first, if there are any chance to survive, try that way first, less dangerous. BMT should be the last try… Also you should consider the health condition of her, if the health is going done quickly, do the BMT ASAP.

sorry, our suggestion cannot give the real help, she have to make decision herself.

Frank

[frank]

good news… happy for you…

Frank

[frank]

i don’t know it may help you or not, i do lose weight during my Vidaza treatment, just wired on it. I don’t know the reason yet???

it maybe it is a chemo…

Frank

[frank]

i always get blood when hgb is under 8.0, personally say, i felt okey even after it dropped below 8.0, yesterday i got the blood which my HGB is already under 7.0(i tried to see if some result from the drug Vidaza). whem i was dignosed last year, my HGB was 5.8. at the low point, i do feel i am easily sweat and short breath, but if you don’t know, you may just think you are getting old. I was diagnosed during my routing check-up, since i have a chornic cough during the year…

Frank

[frank]

sorry for your lost…

just don’t know how to control on this kind of mistakes. the only thing for us is doing some research on everything we may involve…

Frank

[frank]

if the HGB never clime back after the vidaza, is that means the drug doesn’t work for me?

today is the 19 days after my first shot of vidaza, my PLT finally get back a little on weekend, so i don’t need to get plt. But my HGB is still low and dropping, probably i have to get blood today. so i do think i am fail at this time.

the other idea is comming out, since my blast level is very LOW(<3%), from the result of my first try, is it mean i may fail for the 2nd round? I really don't want to put myself in danger again, since we don't have helper to care for my twins, i have to be good there for them.

sometimes, it is really hard to make decision…

Frank

[frank]

yesterday is the 15th days after first shut of vidaza, i have my CBC out, my WBC is 2.67, HGB is 7.4(may need transfusion again), my plts droped to (from 145) 27, which is a little scared. i have to get another CBC on Sat. to make sure my PLT and HGB level, hope i don’t need the tranfusion.

it seems the Vidaza is pretty scared drug, hope this is the worst point i have.

Frank

[frank]

me…

Shoufang Chen.

need my twins??? just kidding..

Frank

[frank]

so glad for you, it is a miracle…

good luck for the BMT

frank

[frank]

yeah,

i am okey with the drug, not the shut site.

i will get my last shut today, the most unpleasane thing for me is the shut site, it is ichy and red, pretty annoy. i think i got 140mg/day for 7 days(any idea???), the antinausea drug cause me a big headach, after stop it(sometime just one) i felt much better.

i still don’t feel it cause me something, maybe it is not the time yet or i am young for this… i took a walk everyday, just the 1st day made me a little worry, but after i stop the antinausea drug, i am okey.

hope it can help me, i will let you guys know.

thanks

Frank

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