Hi Peg....Actually, my Onc. had me on Sprycel after Gleevec, but I had other
issues and he felt that changing me to Tasigna was the right move. I have
joint pain, and one of the side effects of Sprycel was that and he felt at
the time, due to the fact that I was in so much pain, that Tasigna might be
a better option.
I wish you luck with the Sprycel. I know that it's a big move and can be
frightening to change meds. I know that I was scared at first, but it has
been working well for me.
Hang in there and let us know how you're doing.
Many hugs,
Millie
----- Original Message -----
From: "peg" <[email protected]>
To: "CMLHope" <[email protected]>
Sent: Saturday, August 21, 2010 11:41 AM
Subject: [CMLHope] Re: Changing to Sprycel not Tasigna after all.
Hi Jeanie,
Since Gleevec has been the gold standard in the US, many hemotologists
are simply not as familiar with the other options as they possibly
could be. Now that Tasigna has been approved as a 2nd, sometimes
better, front line treatment there is just an assumption that this is
the next natural step for all patients who are Gleevec resistant or
intolerant. A kind of cookie cutter medicine, one size fits all. I
had sought a 2nd oncology opinion, who also recommended Tasigna, with
no consideration for Sprycel.
An additional problem is that medical care is sometimes fragmented out
so, each to his own specialty....with doctors not really having
problem solving discussions with each other, as a healthcare team,
like they did in the old days. When my original cardiologist was
consulted regarding monitoring of QT risk with Tasigna he did not even
know there was another option, and as most non-oncology doctors he was
not familiar with any of the TKI's. It was only by accident that the
oncologist referred me to a different cardiologist at the last minute,
simply because he was in the same building making monitoring a bit
more consolidated. Thanks to all the information and courage everyone
at CMLHope provided me, I took it upon my self to educate this new
cardiologist about ALL the options and varying risks.
To him it was a slam dunk, the Tasigna just posed more of an
uncontrollable risk for me than Sprycel. Obviously this will not be
the same for everyone, but it does go to show how much we must all be
our own best advocates. Knowledge is indeed power. I thank you and
everyone here for arming me with the support I needed to do this.
Things are only going to get more complicated in a few years when
Gleevec becomes the first TKI to lose it's patent and go generic. We
are bound to see many, if not most, US insurance providers limit
coverage of CML treatment to generic Geevec, and not paying for, or
charging extremely huge co-pays, for all other options. Let the games
begin....let's all pray for a cure to come before that day!
Thanks again and blessings to you also, (WE can do all through Him...)
peg
On Aug 20, 2:55 pm, [email protected] wrote:
Hi Peg good for you and I hope you do really well on it.
I didn't think they gave Tasigna for anyone with a QT problem.
Blessings
Jeanie<3
In a message dated 8/18/2010 6:59:09 P.M. Pacific Daylight Time,
[email protected] writes:
Hey all,
Thank you so much for all of you taking the time to respond to me
through this. It has been a difficult week, sometimes leaving me
feeling almost bi-polar...with up days and down! You all shared
valuable experience and concerns that helped give me hope through this
process. In the end, today, after a cardiology consult requested by
my oncologist, the decision is to cancel the order for Tasigna and
submit one for Sprycel due to the additional risk posed by my existing
arrhythmia. The cardiologist felt that when he weighed the
risk...just in my case...of LongQT (tasigna) vs Plural Effusion
(sprycel), the Plural Effusion was far more predictible, controllable
and non-life threatening. He said that it was not one vs the other as
much as what the safest order to put them in was.... for me. But once
again, having a brother and sisterhood to call on has been, and
continues to be, an honor. You are all wonderful. Thanks again so
much, peg
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