Hi Peg...I'm Millie from PA. I'm 71 years young and have been on Tasigna
for 2 years now. I also have heart problems. I have a pacemaker, and
irregular heart beats, etc. I have many health issues that could kill me
before the CML, but so far, so good on it. I've had very few problems. I
have had constipation, but on Gleevec had diarrhea. I finally did associate
it with certain foods, but it didn't stop it....but I took a prescription
strength Imodium and with that and watching what I ate, I didn't have as
many problems and could live with them. The food I had to avoid was
Tomatoes, or anything with Tomatoes in it. I was a mess until they found
out that Gleevec was causing it. I was taken off of Gleevec because it no
longer worked for me. I was so scared to try Tasigna, because of the same
reasons you are. What you need to do is to have your heart monitored every
couple of weeks for a while. I have a Cardiologist...do you? He did EKG's
often and now I only have to have them once a year. I honestly forget how
long they checked it, but it wasn't that long. I know others are having
serious problems with Tasigna, but for me it's been a God Sent....I am doing
so much better and feel much better. I really do know how you feel, but
just be careful, check with your Cardiologist and your Oncologist. Mine
work well together, keeping one another informed. I did have headaches for
a few days...maybe even a couple of weeks, but they left and now the only
problem I have is the constipation which I control with stool softeners. My
EKG's have been good. You must, however, follow the fasting instructions as
not doing so can cause death from what my Onc. told me. I am on 800 mg. of
Tasigna a day. I believe I started with 400 and progressed to the 800mg. I
take it at 5:00 A.M. and 5:00 P.M. I fast for 2 hours prior to taking it (I
even stretch that longer), and then fast for 1 hour after (sometimes
longer). I'm very careful with the drug. We don't eat until 7:00 P.M. as
my son works later then most. It works for me, but you have to figure out
what works well for you. I only drink water during the fasting period. As
I said, I'm extremely careful. Hope that I've helped some. Let us know how
you're doing.
Millie from PA.
----- Original Message -----
From: "peg" <[email protected]>
To: "CMLHope" <[email protected]>
Sent: Thursday, August 12, 2010 5:55 PM
Subject: [CMLHope] Scared to switch to Tasigna
Hi everyone,
I am hoping someone has thoughts to share with me. I was dx'd in
February, started Gleevec 400mg and had unbelieveable results. PCRU at
4 months! However, also severe irritable bowel syndrome by 5 months!
It started as gas, bloating, diarrhea and just got worse the longer I
took Gleevec. Finally, it left me doubled up in pain any time I even
tried to eat. Please understand I am not a lightweight...I am allergic
to pain meds and local anesthetics, have done a root canal with no
anesthetic at all! The IBS was severe. The gastro doc is certain it
is the Gleevec. Immodium didn't relieve the diarrhea any more, nor did
other meds relieve pain. Only pain relief was to not eat at all!
Didn't matter what foods I ate or didn't or what time of day I took
the Gleevec (with food and a full glass of water). Have been off of
Gleevec for a week now and still working on getting bowels back under
control, but thankfully the pain and bloating are gone. They want to
start me on Tasigna next week and I am terrified. I already have a
heart arrhythmia and the Gleevec has already elongated my QT...still
within tolerance, but close. I am scared of dying from long QT, (with
an arrhythmia already, how would I know I was having a problem) and
barring that I am also scared of other side effects I am hearing about
like migraine headaches, high blood sugar, rash....I am the sole
support of four, so stopping work is not an option for me unless I
would also like to stop eating and having a roof over my head! I want
to live, but at what price? Has anyone else had such severe effects
from Gleevec and found a way to improve them?? I really don't want to
change if I don't have to.
--
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A support group of http://cmlhope.com
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