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eve
Memberalso my dad has no appetite so he has been drinking something called gainers fuel – you mix it with milk – and my dad adds several ice cubes in a blender – it gives you 1000 calories per serving (it tastes much better than ensure – it is used by body builders and dad’s hemodoc said it was ok for him to drink it)
eve
Membermy dad used nystatin swish and swallow when he had terrible mouth and throat sores – it really seemed to help him
so sorry to hear that ron and you are suffering so much pain and anxiety
my prayers are with you
eve
Memberhi susan
my dad has been on vidaza for over 1 year – it has help to give him more time in-between txs -side effects have been minimal – of course everyone reacts differently – is your dad being treated at a center of excellence – it doesn’t sound like it – check this website for a center near him – these centers are much more familiar with treating mds that regular hemodocs
eve
Memberterri
so glad bob got a good health report- may it continue
eve
Memberkate thanks for asking – my dad is hanging in- it has been 8 weeks since his last tx – we will know more when he has his bmb in the middle of march
i wish george was doing better – will be praying for him
eve
Memberdear neil
so sorry i didn’t send my condolences sooner – i completely missed the post about your mom
may all the loving memories you have of her live within your heart forever –
eve
Memberdear ron
what a wonderful, deep from the heart message – you have managed to put into words what a lot of us have felt
praying that you win your battle
eve
Membermaddie
just a suggestion – why don’t they do a bmb to see if the vidaza has help him with the blasts – then you will know if it is working –
eve
Memberdear barbra
nothing about this disease is easy – including decisions that have to be made
know that we are all praying for you and ron
eve
Memberdear barbra
i was very sorry to read you post – i
can’t give you any medical information about the hydroxyurea – but i can offer you my prayers that something can be found that will help ron get this disease under controleve
Memberhi suzanne
wishing you continued good health
eve
Memberhi terri
so glad bob is doing well – as you see my dad has been on vidaza for over 1 year – it is holding his condition in check -unlike bob though he still needs txs, but since he is on vidaza they have been spaced further apart
as far as the bruising from the shots goes – my dad has very low platelets so his bruises heal very very slowly – he has found that the ones on his belly (where he tries to take most of the shots)heal a lot better than the ones on his arms (he almost never takes them on the leg – he says those hurt the most) – the bruises are sometimes still there from month to month of treatment, but they are not sensitive by the time the next treatment cycle comes around
wishing bob continued good health
eve
Memberalso – from my knowledge procrit can not cure mds it just helps manage it (when it works)
eve
Memberhi josie
sorry to hear about your mom’s diagnosis
my dad is 82 – took procrit shots at the very beginning of his anemia (before he was actually told he has mds) – it did very little for him
he started vidaza over a year ago – it has stabilized his condition so that he doesn’t need txs as often
good luck to your mom
eve
Memberdear sad
so very sorry about your loss
eve
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