[frank]

i withdrawed myself off the vidaza after the 1st round, my wbc is so low and an infection happened, staying in hospital for a week for the infection, and then stay another 10 days for drug reaction. be really careful and prepared on it, anything may happen, just discuss with your doctor first, and let him monitor the counts carefully, and away any source of bugs.

i think Neil has a good point od this, if i start any chemo again, i will start with low point first, let your body used to it, and then increase the level… but i don’t know any doctor will agree on it.

best wish.

Frank

[frank]

yes, the cause of diarrhea is exjade, i had it in the early stage when i started the medication, but got improvement after a while…

Frank

[frank]

i just come back from my doctor, and i am sure the Exjade cause my white and plate dropped. since my ferritin levels dropped from 4000 to below 100, my doctor recommanded me stop using it. and after 2 weeks, my white count get back to 4.0(previously is 2.0), and plate get back, too.

Frank

[frank]

i do feel un-comfortable for a week after each tx, not reaction, just feel something not right.

Frank

[frank]

Marsha,

Congratulations, enjoy you life.

Frank

[frank]

Sandy,

i am still here for my twins, they are already 2 years old. Glad to hear from you, i still remember the advice you gave to me when i first visit here.

thank you again.

Frank

[frank]

http://www.medscape.com/viewarticle/488038_5

here is some info i got from the google…

Frank

[frank]

pamela,

i am in the age, i don’t have a matched relative donor, so i cannot do the SCT or BMT.

Frank

[frank]

hi Fotis,

i am RCMD too. if you have a related match in your mom’s case, your mom may think the BMT, which the servival rate is pretty high now. if your mom doesn’t have the luck, like me, may try the best to save herself—supportive care.

doctor give me 7 years to live, i hope i can beat the number, but in between, it may have many things happened; just don’t trust the number which doctor gave to you, i think there are so many people on the Forum are far beyond the doctor say.

Frank

[frank]

hi helen,

i started Exjade after April, no side effect, i only have 1 ferritin levels test last month, it seems going down according my HEMO doctor. i am still on it.

Frank

[frank]

i don’t think the backpains are relaed to MDS. i was in this age, too. only thing for me is to have blood transfusion once a while(6-8 weeks).

hope it helps.

Frank

[frank]

From my experience with UnitedHealthcare, they don’t cover the mini_SCT at all, for unrelated SCT they only accept some place, like me the Duke University is the closer one, they don’t accept the search from Johns Hopkins… so you have to ask the insurence for where they covered, and how???

for me, there are a nurse whom work for unitedhealthcare did tell me all these, and she warned me that Johns hopkins is not covered from my policy, so i stopped…

Frank

[frank]

patti,

i used the herbal medicine, sometimes it works for me, but it then doesn’t work. Seems your mom may have the same responce. they told me it needs to wait a long time, then the medicine may cure the disease, i asked for how long(1 year or 2 ???), but it seems to me the result is not that kind of welcome, so i am just stop doing it. i still use the drug, since it doesn’t harm me either, but i don’t expect too much from it.

so never anticipate too much from Dr. Kou, it may not work for your mom…

Chinese Herbal medicine have a theory on curing people, the main thing is to balance the “Yin” and “Yong” in human body, but it may not show-up for MDS in “yin-Yang”, since we always got other’s blood. That part is most difficult for the doctor.

i have been visited a famous doctor in Beijing on my way home, and it seem his solution on me is not working, too. so you have to make a jurgement on your own.

Frank.

[frank]

Hello,

how can you guys get your doctor prescripted the Revlimid, my doctor cannot give it to me since i don’t have the 5q deleteion…

need an answer…

Frank

[frank]

hi, cheryl;

i started my from April, already use it for 2 months, no side effects… i will check my Iron level with my Doc this Friday to make sure it is working for me or not. i may have to start desferal treatment if it doesn’t work.

Frank

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