[frank]

Butch,

sorry to hear all about your wife, hope she can get better soon. it must not be easy for both of you… i also was diagnosed a year ago, but no chance for the BMT(no match found in my family).
it must be much harder for her to accept all these changes, be her side is your big support…

hope every worse thing will behind you guys..

[frank]

how can we test ourself, just ask my hemo doctor? do they need special lab for doing it? since i am MDS patient, and i still suspecious the cause on it, and if it is the G6PD enzyme deficiency, it may be controled by some drugs?
the artical in your link doen’t tell a lot on MDS related issue, it maybe possible you post the original article which talking about the reseach???

thanks for sharing the information, it made me more worry about the generic issue on the stupid disease… Hope it is not…

Frank

[frank]

very intreasting artical, especially it can explain why MDS is more common in male. just wonder how can you find out you are G6PD deficiency, especially my twin have a servere jaundice after birth(which is another indication of the the deficiency), and one of them have to get blood transfusion for it. are there any place can test it?
Frank

[frank]

yeah, it was a bad day to have the news, my 2 brothers and 1 sister is off the game, we havn’t start the un-related one yet, since the chance is good like my doctor said. i still go with Johns Hopkins, i don’t know if they made a mistake on this or not. Hope i can ask them to verify it again(since they made the same kind of mistake on my blood type before)…
being young is good, but too much to be worried if you are young…
Anyway, althrough there are so much pressure in our family, we still try to enjoy the twin, they are almost 8 months old, walk them after work did make me feel a little better…

thanks everyone…

Frank

[frank]

i took benedry before the tx…

Frank

[frank]

April,

so sorry for your loss.

Frank

[frank]

i will know my match result soon in Johns Hopkins, but i don’t know the successful(BMT) rate from them. i may be the next BMT person in there, too.

best wish…

Frank

[frank]

it is all cost-worthy game, i think if i can use the herb med not the tx, it have to be a better for my body, especially i have twin girls, i need to be survive for them..

Frank

[frank]

i eat so many vitamins, B, D, and herb medicine.
grape seed concentration…

it seems the herb medicine begin help me after i tried 3 months, my blood tx began extent longer time, 1 1/2 month to 3 month, even my hemo doctor is surprised on the result. but the drug is not under insurence, so i have to pay it myself(abort $300.00/month).

Frank

[frank]

age 42 male
RARS
diagnosed April 2004
depending on blood transfusion, with herb medicine, the transfusion time has been sustained. no responce to procrit or any medicine.
Await BMT match.

[frank]

Neil,

Do you know is it any connection between the blasting number and the drug? i think my hemo means my blasting rate is low, and the drug is more help for high blasting patients. I think mine is the same as your category, and i do have ring sideblasting…

thanks,

Frank

[frank]

it seems i don’t have the high blast, less than 2%… and my hemo doctor think it won’t help me, he said something like the “dyblasting” things, i may ask him again.

just curious abort what is the connection.

Suzanne, i knew you have a “lucky” experience with JHU, but it is not my case, i don’t know i should listen to them or not(for my past experience); just like you with NIH.

Currently i am trying to do the BMT with them, and i don’t want to have so many chemo before the BMT, so i need to make sure if the drug is really help me.

Frank

[frank]

YuSung,

sorry to hear abort this.
which hemotology you are seeing in VA right now, i am live in VA/DC, too. JHU is a good place to get confirm on the diease, wait untill the JHU.

[frank]

Marsha,

it is a great news, and an encourage news for our family. my matching game just started, i have more confident from your mail.

pray for you…

Frank

[frank]

thanks, this is the first time i saw the name ms275 in other article…

sound really exciting, but do MDS have cancer cell?? i think i saw something like “no cancer cell found” in my BMT.

thanks

[Author]

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