Re: Effusion and enlarged heart...Update(Skip)

[Guest guest]

Just curious---- How long have you been off meds and for what reason? The

fluid?

I love seeing that you have been dx for 33 years. That is a wonderfully

long time. I hope to say that one day as well. Are you PCRU? My response

to Gleevec and Spryrcel is great. Its the side effects that keep screwing

everything up. I am hoping that is I have to go to Tasniga(sp), I have the

same good response. I just don't know much about the drug or what to

expect.....

Jen

In a message dated 10/1/2010 7:01:23 P.M. Central Daylight Time,

skipd_2002@... writes:

is'nt it great to breath... I was taken off the drug but there was

enough in my system

to fill up my right side for a while, so keep an eye on it. I have been

off all

meds for a while now

will see the hem doc next couple weeks and see where if anywhere we go

from

here.

The trouble is they have no one (they can find) that has survived as long

as me

so they

have no data available. They have killed all my bone marrow and I am to

old to

try a stem

cell, or BMT. So I am going to have to ride this bull until it kicks me

off.

hope you do not get any fluid back.

BTW nurses are my favourite people, I love each and every one of the

nurses in

Medical Day

they treat me as if I worked there, As does everyone here, thanks Lottie

and

Jimmy

SkipD been on myleran, gleeved nilotinib, dasatinib back on nilotinib etc

now

on

nothing was dx'ed 33 years ago feel pretty darned good except for low hgb

and

plts

________________________________

From: " _vegasrnjen@..._ (mailto:vegasrnjen@...) "

<_vegasrnjen@..._ (mailto:vegasrnjen@...) >

_ _ (mailto: )

Sent: Fri, October 1, 2010 6:56:45 PM

Subject: [ ] Effusion and enlarged heart...Update

Hey!

Just wanted to say that I went in for my CT scan today and they saw a lot

more fluid then the xray picked up. The radiologist came in the room and

told me it was his recommendation to drain off that fluid. He called my

oncologist and they went ahead with it. They drained out 1.4 liters. I can

now take a deep breath but I am still beyond wiped out. I am thinking I

have to have a break or a reduction in the sprycel. I cant function right

now.

Thanks for the comments and suggestions from everyone.

RN

Wife and mother of 3 (14,11,9)

CML 5/13/05

Gleevec 800mg until 8/07

Sprycel 100mg since

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