Carolyn, Have you had plural efusion before? Since you have been on a
low dose of sprycel for years, has this happened before to you? ARe you
on a diuretic on a regular basis? I am on sprycel as well, have been
for the last two years. concerned about swelling, but manage it through
diuretic and potassium. just wondered what your history has been? How
is your muscle fatigue on the sprycel? thanks for the info, helpful to
me to talk withothers on the same meds. Beth
-----Original Message-----
From: TEDBDD <ted...@aol.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Tue, Aug 28, 2012 7:48 am
Subject: Re: [CMLHope] Re: stopping meds.
Richard....I am totally with you and your decision. The longer I live
with CML the more I understand that there are few "givens". Each of us
reacts differently to the TKI's and we must make individual decisions.
Like you, I am so grateful for these amazing drugs that have enabled us
all to enjoy life in a way not possible 20 years ago. All the best in
your journey. Tom in KY
In a message dated 8/27/2012 11:50:47 P.M. Eastern Daylight Time,
richard1huff...@comcast.net writes:
Each of us need to do what is best for that person. My situation is
being monitored by some of our best specialists. I have other major
medical problems that are being monitored also. I have a heart issues,
lung issues from three bouts with pnemonia when I was young and 40
years of smoking. Some of the newer meds are under consideration but
with Gleevec's history of complications compared with the newer meds
know problems to date makes me pause and ask a lot of questions about
what would me right for me. I smiply post what is happening to me
without recommendation what would be right in anyone else's situation.
The one problem I can help address is that CML is becoming a lifetime
condition and not the death sentence is used to be. We are so
fortunate to have some of our members that survived until the need meds
were found. They are my strength to challange CML headon in a
different direction than most CML Specialists and CMLer's. Shortly
after my diagnosis I discussed whith my ONC about participating in the
trials of available other that Gleevec. He advised me to take Gleevec
as it wasn't my time to be in trials but someday I would have my turn.
I am 4 years and counting to see if my body can control CML at a low
level. That in itself is a miracle considing when you consider I was
given a 5 - 10 year lifespan and now I will die of something else.
Life,
Richard H.
On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote:
Hi CML Group.
I haven't posted in a long time but the lastest post about not taking
meds interested me. I have been on Sprycel 20mg bid for about
5 years. My onocologist checks pcr levels and also a fish test every
three months. 9 times out of ten the CML is undectable but every once
in awhile there is a very minute count. It tells me that the CML is
just under the surface. I recently had to have a liter of fluid taken
out of the plura around the lung from the sprycel. My onocologist told
me whatever I do don't stop taking the meds. I assured him I would
follow his directions to the "T" as I feel without these miracle drugs
this would be a death sentence. That is why I was amazed that Drs. are
recommending stopping the therapy. Maybe my onocologist is just being
cautious.
Carolyn Kuptz
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