[frank]

here is the trial information
http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2006-H-0062.html

i don’t have any side effect on the trial.

Frank

[frank]

karen,

i had joined the trial in NIH in April, i don’t know i have a good response or not, but i do have the immune response.

the trial is for low-risk MDS in HIN(what i had), the theory is the vaccine will let us to generate antibody for MDS cell, and kill the cell to unblock the normal cell. since the destroy of MDS cell will block the normal cell release, and the killing of MDS cell may help boost the normal cell creation.

the trial use 2 vaccine to make it happen, but i haven’t seen any improvement from it. i will see my doctor soon, and maybe continue the trial.

Frank

[frank]

patti,

i didn’t post a lot, but i am reading from the site all the time. It help me a lot from all your guys posts, and knowledge me a lot.

i read your post about the Chinese Herbs, and really happy on the result for your MIL. i think i may continue doing my herbs things, maybe it already help me, let’s see.

thanks a lot.

Frank

[frank]

Gloria,

i knew there are several kinds of herbal doctor in American — Chinese, Indians, and Maxician. i have been seen chinese doctors, but i really cannot say it help me, but they do have records show me that they did help some patients. And i think some MDS medicine is really from the Chinese Herbal(i forget the name.).

if you want to find a Chinese herbal doctors, just stop by any China-Town, and ask someone in there, but you may have have to find the reputation from the local Chinese or someone you knew.

i stop seeing the chinese doctor in DC, since i don’t think it help me. and i just get some medication from China during my trip back. it does make me feel better but not help me yet.

but they continue saying “you have to give a time”…

it really didn’t do any bad things on me, so i still use it.

FRank.

[frank]

elle & glen,

thanks.

i went back there just to bring my kids back, i missed them too much.

thanks again.

Frank

[frank]

QQ,

i will be back to china(beijing) on may 7th, if you need any help, let me know.

i usually see a herbal doctor in China Academy of Chinese Medicine Sciences(http://www.cintcm.ac.cn/catcm/yz/e_catcm.htm).

i cannot say it help me or not, but it doesn’t do any bad thing either…

Frank

[frank]

Jerry,

i did ask the Johns Hopkins about the herbal remedies, it seems they don’t have any idea on it either. but they told me that “if you felt okey, then don’t stop.”.
From my knowledge, the dieasease is not curable from any medication now, but somehow, there are someone claimed that they are getting better by using the herbal medication, there are no “right or wrong” on the issue, since all is kind of medication, just make sure you don’t have side effect, and your body is getting better and not worse.

Frank

[frank]

QQ,
i send you a email, did you get it???

Frank

[frank]

QQ,

i came from China, too.

and Frome my experience is the SCT or BMT is a decision from your sister. if you guys have a HLA match, maybe the SCT is a good decision, but if not, the support care is the only option. IPASS 1.1 is not a high score, there are 2 hospital back in china have a good experience for treating MDS patient(tradition herb medicine), but depending people, someone may not have a good result.

make sure what is her type, i bet she only have RARS, or some low risk MDS.

sorry…

Frank

[frank]

Cathy W,

it is a great news for us, i may try it… since i don’t know it will help me or not, and my doctor asked me once, an you did give me a hope…

thanks again.

Frank

[frank]

Patti,

i do have reaction, too. basically several times, and pretty wired. i also have reaction with multiple antibiotic-drug. so my doctor always gave me second benadryl before the sencond bag transfusion, it helps but it also made me sleepy after it.

FRank

[frank]

Happy Birthday… just like you, i always asked myself the same question, another year again, just put hope in there, and fight ofr it. Happy new yrar…

Frank

[frank]

Patti;

don’t give up. i knew it is hard time, but like what you did said to me, don’t give it up.

Frank

[frank]

Martin Uk,

welcome to the Forum. it seems we are in the same age group now. i was diagnosed in early 2004, just before my twins born, it is so terrible. and i havn’t try the ATG, but i do try Vidaza, it is not a pleasant result. i havn’t go back to the treatment, but really afraid on it.
i also work full time, doing execice everyday, but i try to avoid claiming and some other activities; just be cautious. MDS is a serious diesease, have to face it.

covergirl, nice to see you again. how’s everything.

Frank

[frank]

So sorry for your loss, Jon…

Frank

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