I am an example that you do not need to follow the standard treatment dosing
of 400 mg.  At 400 mg I had muscle cramping so bad that it woke me at night,
prevented me from doing the crafts I love to do because my hands cramped
with the slightest fine movement. It even caused me to stumble at times
because my feet and legs cramped so badly.  I went on Gleevec on Sept 4,
2004 and after dealing with the cramping for 3 months, my Oncologist dropped
my dose to 300mg in Jan of 2005.  I have been on 300mg a day since then,
have had a complete molecular response with no detectable bcr-abl since
then.  

Just make sure your oncologist is following your blood work frequently.  I
have bloodwork drawn every 2 to 3 months, I have flow cytometry for bcr-able
by FISH every 6 months and a bone marrow biopsy about every other year.  I
am in 100% molecular remission taking 300mg  daily for the last 6 years.

 

From: [email protected] [mailto:[email protected]] On Behalf
Of [email protected]
Sent: Saturday, June 11, 2011 6:38 AM
To: Digest Recipients
Subject: [CMLHope] Digest for [email protected] - 4 Messages in 2
Topics

 

  Today's Topic Summary

Group: http://groups.google.com/group/cmlhope/topics

*       200mg/day effective for normal male? <>  [2 Updates]
*       dasatinib and hyperthyroidism <>  [2 Updates]

 Topic: 200mg/day effective for normal male?
<http://groups.google.com/group/cmlhope/t/5fc49ae905f0db3b> 

Dour Daze <[email protected]> Jun 10 01:26PM -0700 ^ <> 

 
What would you expect to transpire to a newly diagnosed cml patient
chronic phase... male 6'0 if he is treated for a long period of time
(more than 7 months) on 200 mg/day of Gleevec? What is the risk of the
lower dosage?
DD

 

"Pat Elliot" <[email protected]> Jun 10 06:30PM -0700 ^ <> 

 
The risk is a lack of response and that could lead to multiple
complications including going into blast crisis. This could put the
patient's life at risk. The standard dosage is 400 mg/day. How is the
patient being monitored and what have the tests shown? Has a reason been
given for not following the standard protocol for CML treatment? 
Pat in Phoenix
 
 
-----Original Message-----
From: [email protected] [mailto:[email protected]] On Behalf
Of Dour Daze
Sent: Friday, June 10, 2011 1:26 PM
To: CMLHope
Subject: [CMLHope] 200mg/day effective for normal male?
 
What would you expect to transpire to a newly diagnosed cml patient chronic
phase... male 6'0 if he is treated for a long period of time (more than 7
months) on 200 mg/day of Gleevec? What is the risk of the lower dosage?
DD
 
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 Topic: dasatinib and hyperthyroidism
<http://groups.google.com/group/cmlhope/t/d50db76908b3185f> 

Martin Gartenberg <[email protected]> Jun 10 09:38AM -0400 ^ <> 

 
Hi,
 
Actually I am not on any medication for CML because i had a bone marrow
transplant more then 22 years ago but did develop hyperthyroidism because of
all the radiation and chemotherapy I received.
 
You really don't have to worry about it because there is a very simple
solution to the problem. I use a drug called Levothyroxine which is a
generic for Synthroid and is very inexpensive and really has no side effects
except for making you feel much better. I use a very small dose .075
micrograms once a day. It is a little blue pill that takes your blues
away. That's about it for your thyroid problem.
 
I wish you continued health and happiness. And also *18's*. In the Hebrew
language the number 18 represents life, which is pronounced as Chi. It is
said as if you were clearing your throat.
 
Marty
 

 

Tracey <[email protected]> Jun 10 08:46AM -0700 ^ <> 

 
Hi Marty,
 
I believe what you have is actually hypothyroidism.  This is when your
thyroid is under active.  The drug Levothyroxine helps to compensate for
that but in Mr Grinch's case, he said that has hyperthyroidism which is
actually the opposite of what you have, it's an over active thyroid.  If he
took Levothyroxine, it would probably kill him. 
 
Unfortunately for Mr Grinch, hyperthyroidism is much more difficult to treat
than hypothyroidism.  
 
Tracey
 
 
--- On Fri, 6/10/11, Martin Gartenberg <[email protected]> wrote:
 
 
From: Martin Gartenberg <[email protected]>
Subject: Re: [CMLHope] dasatinib and hyperthyroidism
To: [email protected]
Date: Friday, June 10, 2011, 9:38 AM
 
 
 
Hi,
 
Actually I am not on any medication for CML because i had a bone marrow
transplant more then 22 years ago but did develop hyperthyroidism because of
all the radiation and chemotherapy I received. 
 
You really don't have to worry about it because there is a very simple
solution to the problem. I use a drug called Levothyroxine which is a
generic for Synthroid and is very inexpensive and really has no side effects
except for making you feel much better. I use a very small dose .075
micrograms once a day. It is a little blue pill that takes your blues away.
That's about it for your thyroid problem.
 
I wish you continued health and happiness. And also 18's. In the Hebrew
language the number 18 represents life, which is pronounced as Chi. It is
said as if you were clearing your throat. 
 
Marty
 
 
On Wed, Jun 8, 2011 at 6:16 PM, MrGrinch <[email protected]> wrote:
 
I was diagnosed with CML in Nov 2010 and began treatment on dasatinib
later that month. My numbers are all going the right direction, which
is great, but was getting an increasing amount of side effects.
Several of the side effects were not normal for that drug, so I went
to an endocrinologist and have discovered that I now have a
significant thyroid problem. Has anyone else experienced
hyperthyroidism after taking this drug?
 
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