[eve]

kate are they giving him any vitamin k

when my dad was in the hospital and his platelets were quite low they gave him vitamin k

but then again every case is different

eve

[eve]

andrea

your mom’s cbc sounds quite good

i don’t really know if they can tell if the vidaza is working with just one round – i think they have to give it more time

the only thing they usual check before they start the next round are the liver enzymes – which is done through a regular blood test

my dad had a bmb before he started the treatment and then again before his 3rd treatment

good luck to your mom

eve

[eve]

hi kate

so sorry george is not feeling any better – if you can’t change doctors while he is in the hospital maybe you can get a copy of all his records and take them to another doctor for another opinion

good luck

eve

[eve]

dear sad

can’t they give him something to help with the pain – at least make him feel more comfortable

truly a very sad situation

prayers are with him and your family

eve

[eve]

my dad has lost an awful lot of weight – it started even before he was on the vidaza – he now takes a food supplement called gainer’s fuel- (he hated the taste of the ensure) – it has stabilized his weight and maybe he even gained a pound – my dad could afford to gain at least 30 lbs – but no matter what he eats he can’t gain any substancial weight

it might just be the nature of this disease

eve

[eve]

jim

after the vidaza treatment my dad’s numbers go down – sometimes to the point that he needs a tx – he was tx dependent before he started the vidaza and the treatments have allowed him to go for longer periods of time between txs – they have just decreased the strength of vidaza to see if they can stretch out the tx time even more

dad usually gets tx when his hgb dips below 9 and hct below 25 – but everyones threshold is different

has your mom had a bmb to confirm what stage of disease she is in – i believe that is truly the only way to tell

good luck

eve

[eve]

kate

george has been in the hospital for quite awhile – hope he gets out real soon – what kind of infection does he have

wishing him well

eve

[eve]

barb

i don’t know, but i think you should definitely call the doctor and ask

good luck

eve

[eve]

pam

do you know what the wbc differentials were when your count was up to 17

eve

[eve]

pam

fingers are crossed

eve

[eve]

hi pam

dad had high peripheral blasts in the blood when he was hospitalized in november – they did a bmb and it only showed 3% blasts in the marrow – the hemodoc said that the virus or infection he had caused the blasts to appear in the peripheral blood and that it was the bmb that was the true marker of disease progression

we are going to keep a close eye on both his wbc and peripheral blasts and if need be dad will have to have another bmb – hope it doesn’t come to that

hope all goes well for you

eve

[eve]

dear leigh

i wouldn’t give up just because the doctors said there is nothing they can do for your dad – he is only 69 years old

find a new doctor – preferable one that has treated many mds patients –

good luck

eve

[eve]

hi drew

first and foremost – is your mom being treated by a doctor that is experienced with treating mds patients – has your mom been given a classification of mds

your mom is very young – has anyone mentioned a bmt to her – it is the only chance for a cure

you can check the cancer web site for any clinical trials and this (mds) site

there are some other drugs getting close to being approved among them is revlimid (easier to take than vidaza – it is in pill form) i don’t know if there are any trials open for that at this time

my dad is on vidaza (he is much older than your mom) it has allowed him to go a longer time before getting txs

this forum is a great place to exchange and get information

good luck

eve

[eve]

hi all

just got back from the local hemodoc with dad – bottom line is – there is no need to panic – doctor is not terribly concerned about the elevated white count – dad’s spleen is larger than it was last month, but still no need for alarm – and as far as the toxic gran notation on the cbc – he told me to ignore it

so for the time being i am a little more relaxed

dad will see the mds specialist next week and see what he has to say

eve

[eve]

dear sad about dad

praying for a miracle

eve

[Author]

Posts