[frank]

Conrad,

from one of my friend experience(they live in Canada), the remission can last longer than 5 years, and they both think it won’t come back(5q-deletion), but who knows.

for treatment option, there are several place discuss the BMT and maintainance, even in the blood magazin, but mostly is the patient’s decision on the treatment unless the diease go worse.

have a good place for consultation is the best idea, you may get more info on the diease and what you will face to.

Frank

[frank]

hi, Scott,

just like patti said, don’t be so upset. you have to encourage yourself to fight the diesease, try to survive.
i knew what is the feeling as a parent, but we have to deal with it.

good luck for the Vidaza treatment, there are so many people responce for the drug, especially with high blast number.

Frank

[frank]

i took 1 mile walk every day…
should be fine if you can do some exercise…

Frank

[frank]

i will be really exhusted after each blood tx, i will get my energy back after a week. maybe it was the blood or something else. i really don’t like the tx experience, especially you saw the blood come into your body, and the counts is dropping everyday, it was a frustrated experience.

i alwasy look into the post about vidaza, since maybe i have to get back the drug someday, hope everyone have a good outcome after the drug. so many unknown for people with low numbers in their counts, i continue ask my Doctor and everyone i knew, it seems no data for individual categories, especially for RA(or RARS), and no data for the fatelity… you have to be really careful if your number is low during the down period.

Frank

[frank]

Sandy,

i got the same situation, but i didn’t get the blood tx untill 10 days over the drug. low PLT, low RBC and low WBC, the low WBC cause me an infection that stop me getting the drug again. so you have to be cautious, listen to the Dr., and sustain there, avoid infection. My counts are getting back after 1 months(start at may 25th, getting back arround after July). I was hospitalize during the infection and the drug reaction.

so take a good care, maybe delay the next treatment untill the counts back.

Frank

[frank]

I don’t know it is the vidaza or not, since i toke it around end of may, and my recent tx is around end of July, and i don’t think i can get the tx free, but less is better…

Frank

[frank]

Thanks, everyone.

I am fine, just came back from my china’s trip. basically i am pretty good, and something did help me recently, and i don’t have blood tx for over 2 months alredy, that is the other reason i rush back to China, sine i did take some herb medicine a month ago, but i bet it is not the herb. I have my visit to my hemo last week, hgb is 8.7, still don’t need blood. and i really wonder i have to continue the vidaza or not??? hard decision.

China’s trip is good, especially i saw my mom & dad, we left our twin to my wife’s mom, the condition is better than our’s here(they have 2 nannies every day and night, and it seems they are okey).

i did read the forum everyday, just doesn’t post. thank for your guys conserning…

Frank

[frank]

diner,

i will start it again sometimes in Sept. Don’t be afraid of it, but you have to cautious on it. For me, i really don’t take it seriously in the begining, but the consequence after it almost kill me. it is a kind of chemo…

My experience is, after 10-15 days, you plts and wbc will drop to its lowest point, it is the time of your most dangerous period. Since i am transfused patient, too, i have to get blood in that period, but my vein was destroyed by the chemo-thearpy(vidaza), so they have to put a pick-line on me, but the operation cause me infection in blood stream, then i have to use antibiotec, the worse thing is i am alargy to the antibiotec they used, the high fever for 4 days is my worse nightmare.

so be cautious on it…

Frank

[frank]

i did take it at the end of May, i did have the lowest point of everything, but the most worse thing is i caught an infection in blood, and i had an reaction of the antibiotech they used for me. i was hospitalized for over 2 weeks, high fever(above 103 for the reaction of the antibiotech).

Frank

[frank]

i don’t have a match even i had 2 brothers and 1 sister, sometimes it may happen, but don’t give-up hope, just like my wife told me, maybe god want this way, and test you on it…

Frank

[frank]

i worked as full time, but have to get transfusion frequently…
Frank

[frank]

sorry to hear all these.

it seems no clear road for you, too. continue hope you getting better first. my vidaza treatment have to delay until my doctor figure out the reason on what is wrong, too.

hope things turn over someday for you…

Frank

[frank]

so sorry to hear all these.

big HUGS, and love…

Frank

[frank]

CAT is the same as MRI, i had 2 during my hospital stay, you shouldn’t worry on it, quite simple and easy things, they will inject a kind of drug into your body and make the image more clear on the spots, maybe the stuff is not a small potion, but it won’t hurt you any.

Frank

[frank]

Carrie,

during my staying in hospital, even i have 104 fever for 3 days, doctor cannot figure out what is the cause, i do the X-rays, MRI and every test, all is negtive, but i do have rash on the third day, so they began thinking for the drug reaction, they stoped the drug by the fourth day after i was in the hospital with high fever and i continue asked for if it is drug reaction(by my sence, i do feel it may be the drug, since the worse point is after i have the drug an hour later).
think all the aspect, be positive, may be a little things which doctor ignored…

best wish.

Frank

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