I looked on the MaxAid site http://maxaid.org and it looks like Slovakia does
not yet have access through the Novartis Patient Assistance Program.
Rob
----- Original Message -----
Sent: Tuesday, June 21, 2005 9:01
PM
Subject: Re: [CML] Re: Confused
My parents have been told no. It was the biggest shock for me
because when I got diagnosed I wanted to go home. I want to talk to some
doctor in Slovakia to find out how they treat it over there. I just can not
get in touch with anybody. I am trying, hopefully soon.
Rob <[EMAIL PROTECTED]>
wrote:
Is Gleevec not available in Slovakia?
Rob
----- Original Message -----
Sent: Tuesday, June 21, 2005 1:57
PM
Subject: Re: [CML] Re: Confused
Hi Stefan,
your name sounds European.
Since in Slovakia the only option for me would be BMT and most of the
doctors told my parents to do it, my father insists on me. He just met
some people who had CML and got cured by having a BMT. That's why he
thinks it woul be the best thing. A biggest problem for me is, that my
parents are not here. They can not talk to the doctors and find out more
information which are accesible over here. I can't imagine to have a BMT
and not have my parents here, my grandma, sister, and others. My parents
are also scared that if I wait a long time after I was diagnosed BMT may
not be succesful. Well it is a difficult decision and I am not able to
make it, I am sure it would be easier for me. Keep in touch,
thank you, Livia sshine2412
<[EMAIL PROTECTED]> wrote: Hi
Livia,
I am 31 and was diagnosed in November 2004, so I can
understand what
you're going through. I too am on Gleevec, and
seem to be responding
well, but having a BMT is something I've
thought about. My doctor
wants me to stay on Gleevec for about
a year before we make a final
decision on my treatment. I have
2 perfect match donors if I want to
go that way, but I feel good so
I'm a little reluctant. It's kind of
like being stuck between
a rock and a hard place. Do you get the BMT
with the chance of
being cured and the risk of losing your life, or
do you stick with
drug treatments and eventually risk the same? I am
very
optimistic about current and future treatments. At the same
time, I wonder if I can manage this disease for the next 40 years
with drugs alone. Ultimately, it' s a personal decision, but
it seems
that most CML doctors are recommending the Gleevec route
because it's
working for most patients and the treatments are only
going to get
better from here. My personal opinion would be to
weigh the options
and discuss them with doctors that specialize in
CML. Plus, you may
want to wait and see how you're responding
to Gleevec. I hope this
helped. Take care and God
bless...
Stefan
--- In [email protected], livia
klescova <[EMAIL PROTECTED]> wrote:
> Hi
everybody,
>
> It hasn't been a good day today for
me. I am very confused. I went
to my oncologist who is
always talking about BMT to be the best
option for me. I am in a
chronic stage of CML. I am taking Gleevec
600 mg and I do not
know if I am in remission or not... I was
referred to the oncologist
at Johns Hopkins University Hospital in
Baltimore (do you have any
experience with any particular doctor over
there?) to talk abt BMT
and the doctor said that I should stay on
Gleevec as long as it
works and even if it doesn't there are some new
promising drugs
which should substitute Gleevec in the future. He
says that BMT is
still going to be an option for me in the future but
we hope I will
never need it. My primary oncologist (who is not a
specialist for
CML) says that she is not so optimistic about Gleevec
since many
people have failed it, and I am young (26 yrs - ugh still
can not
believe I am so sick, so young) and BMT is the best to do
withing
the 1 year since I was diagnosed. Anyway, can
> somebody
write me what do you thinkg about it?
> I am sorry I
am curious, but I would like to know who is Rob. Just
to know who is
providing such a good info for us.
> It is midnight and nobody to
talk to.: ) It is early in the morning
and my friends and parents in
Slovakia are sleeping. I would be able
to write and write, to
substitute my lack of communication.
> Thanks for all the emails
I received. All of them are very
helpful.
> Have a nice
day.
> Livia
> dx 02/05
> Gleevec 600
mg
>
>
>
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