[frank]

thanks everyone especially Jimbob.

just got my 3rd shut, a little fever(99.3), and some headach at evening, the shut spot was red, size as a pingpong…

3 days, my counts do dropped, HGB 10.4 to 9.5, WBC 3.1 to 2.6(maybe is the reason of fever).

just hope i can responce to this drug…

Frank

[frank]

Jimbob,

sorry to hear the problems, i am think that after BMT(SCT), you may not need to fight with this anymore…

keep youself strong, just believe it.

Frank

[frank]

i start the 1st shut yesterday, doesn’t feel much from it…

came to work in the morning, and i think i will be fine.

just hope it can help me…

they told me that at around 10-14 days, which is the dangerous day, and have to careful. just wonder if it works, and i have to shut it every month or once for a while? is it possible something like remmision(lucky)?

Frank

[frank]

thanks Kathryn,

the girls does made me rethinking of life, i felt so amazed by their development. and i am scared, too. They are great right now after so many troubles after birth, they just passed the 9 months mark and pretty healthy.

and i knew i have to find some way to get myself healthy and good, just for them…

Thanks again

Frank

[frank]

thanks,

for me, since i am young, i am pretty healthy normally unless my counts went down to some level(below 7.5). my white is low, but always keep at arround 3.0.

i didn’t take any drug, only vitamins, and just hope the vidaza will not be so bad for me.

Frank

[frank]

i heard from one of my doctor that it did have 30% responce(improvement) for not -5q abnormal(his lab joined the trial), just don’t know for the secondary, and the drug will be out at end of this year…

Hope it is true.

Frank

[frank]

where are you getting ATG?

just welcome to the forum, thanks for posting…

Frank

[frank]

thanks,

Frank

[frank]

get the match game going, for me it spend almost 2 months to finish the match(even the result is bad). depending the insurence, maybe try mini-sct(more save), i heard it has a really good success in England(to cure the MDS), not here…
the disease is so stupid, like me i always feel pretty good even the blood counts already dropped into 7’s, never know how fast it will go and how to control on it.

with a match, you may be a lucky one… just try the best to fight with the beast…

Frank

[frank]

Butch,

so sorry to hear that, hope you can get thru all these mess. take care yourself.

Frank

[frank]

martin,

where are you in china? basically i am chinese, but i knew there are several good place you may want to try. after the chemo, you have to wait…

try the following link, i didn’t have service with them, but it is good to get some knowledge.

http://www.cn-blood.com/

i think what you can do is to get more knowledge right now, and looking for the option. MDS is a terriable disease, and you have to find a good doctor to deal with it. I don’t you can get the Az5 or not, but Az5 is not like a curable drug either…

Frank

[frank]

thanks Neil,

jus felt myself is so useless on this. Thanks for everyone.

Frank

[frank]

thanks doreen.

Since i am in earlier stage of the MDS, no-body suggest a BMT right now, this is the opinion from 3 doctors…

Yeah, i may try to push for the unrelated, but i have to change to Duke university, and it is 300 miles away from me…

Frank

[frank]

related donor and un-related donor is a totaly different story, most insurence cover the related not the un-relsted, and cover the full-bmt not the mini-bmt, like the unitedhealthcare. they only have contract with certain hospital and facilities, not all. for me, they cover the related in Johns Hopkins University, not the unrelated, so i have to find a hospital which they cover for the unrelated… especially they only have contract with Johns Hopkins from last year, my first bill from the Johns Hopkins is still pending–just because the cover of the contract…

insurence have option for you, the case manager of insurence will give you advice on it.

[frank]

Hi, lola,

ask your insurence which hospital will be covered by them, some insurence have a contract with one hospital, but doesn’t have contract with others. i got the same case now, my insurence Unitedhealthcare doesn’t cover for the unrelated HLA with Johns Hopkins University, and i have to goto another hospital to do it. My insurence suggest me Duke, since they will cover it if i am doing it there…

Frank

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