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I am a caregiver.
Rob
----- Original Message -----
Sent: Wednesday, June 22, 2005 7:18
AM
Subject: Re: [CML] Re: Confused
Yes Rob, it makes my situation so difficult, because even if there would
be Gleevec next year in Slovakia, there would be lack of experience.
You are doing a great job. I wonder if you are a doctor, a psychologist,
or one of us CML patients, ... Anyway thank you for info you are providing for
us. Rob <[EMAIL PROTECTED]>
wrote:
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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