[frank]

it is RARS, not RCRS.

[frank]

I began my vidaza treatment from April 1st, this week should be the worse one. I got blood yesterday, and will se my doc tomorrow. hope everything is okay.

[frank]

sorry to hear this, you are always a modol for me, even i didn’t post. be strong.

[frank]

sorry scooter;
i didn’t read this thread for a while. I do have iron issue, just use Exjade. I am not bad like you, i will need 2 units for every 5-6 weeks.

Frank

[frank]

Scooter, I was diagnosed with RARS at age of 41 in 2004, havn’t try any new treatment yet, just transfusion right now.

[frank]

thanks everyone, it seems is what you guys said, and my doc said the same words. it may go away later or harder to find blood.

[frank]

i am in “wait and see” situation from 2004.

i had blood TX every 6 weeks, no prograss. No BMT match in my family, failed on Vidaza(just once, had a complicated reaction), some other unsuccessful trails. Maybe i will try vidaza again in the future, but not until my twin daughter getting older enough.

everyone have their own situation, it is the decision made by my doctor(since any treatment is for high-degree MDS) and myself.

i knew at least 2 others in this forum were in the same situation.

Thanks.

[frank]

i always check this site fordrug info.

hopeit will help.

http://www.aamds.org/aplastic/disease_information/drug_information/mds_treatments.php

frank

[frank]

Rebecca,

basically my kids give me a lots during the 2 years old period after they went to daycare, i probably got infection 10 times during the winter time, same as they do, especially i do take care of them during their sick, that is the reason. My wbc is low, too. 1.8-2.4 range, so i have to be very carefully to do everything arround them. but taking care of them may contribute to my sickness, too. Since i cannot have enough sleep and rest. i remembered that i sometimes took shot for bosting my white count(once a month, neupegen???), it helps. also i did go outside with them everyday(stroller them out), it may help, too.

Frank

[frank]

Rebecca,

beside the health problem, i think the small children may also the reason for your husband sick. i remembered the time when my twins turned to 2, i had the worst year… but things are getting better now, they will be 4 year old on augest. they are getting better, and basically i only get 1 infection for last year.

hope it help.

Frank

[frank]

probably 10 for me, 2 units at each time.

[frank]

Margaret,

if he had a low degree MDS, wait and see may be a good option, otherwise you should push for the unrelated BMT, maybe you don’t need do it, but the matching game can last a year long, it is better to prepare well.

Frank

[frank]

Neil,

you are the courage of us, keep us updated.

thank you

Frank

[frank]

good news,

i failed once for vidaza, which got me in infection, and stop since. but i still want to try the drug some day later(until my girls reach some age).

from what i heard in this site and someone i know, as long as the drug effect, just keep continue, and i knew someone get it work for 4 years. really worth it.

thank you for posting a good news for us.

Frank

[frank]

terri,

so sorry to hear it.

stay strong, i was encouraged by you guys before.

Frank

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