Hello Richard:
So far I have not been able to find a group in greater Los Angeles area. Is there any?
I find the meetup.com very confusing where they promote and tell you about all kinds of groups but none of them are for CML.
Is all of this a fraud?
Richard Troxel <[EMAIL PROTECTED]> wrote:
Richard Troxel <[EMAIL PROTECTED]> wrote:
Hi Candidasa,
Welcome to the group no one wants to join!
My experience was very much like yours. However, before my diagnosis I could not walk my dog more than a few blocks without extreme fatigue setting in. This is what sent me to the doctor and how I discovered that I had CML. My ONC discovered that I was close to heart failure due to the terrible condition of my blood.
Anyway, yes fatigue is normal but I don't think it is all the Gleevec. First, you have CML, which is a terrible, potentially fatal, leukemia; this stresses your body tremendously! Second your body, with the help of Gleevec is fighting for your life and this takes an enormous amount of energy from your daily reserve. Finally, the Gleevec is busy suppressing the production of some blood cells which can cause an anemia that steals your energy. The good news is that, for most CML patients, Gleevec gives hope where there was little to hope for. As dumb as it sounds, the remedy for energy loss is more exercise. Try to stay active, push your body to provide your energy needs (within reason). I walk my dog and try to play nine holes of golf every day. I am exhausted by the end of the day but my spirit and energy is up for the heart of most days.
Hang in there and stay with this group, these are a great bunch of people who have a lot to add to our knowledge and spirit.
Richard Troxel male/61 years/LA California
dx 2/2003 Gleevec 3/2003 PCRU 9/2004
On 1/3/06, candidasa72 <[EMAIL PROTECTED]> wrote:Hi everyone, I'm new to the group and was dignosed with CML Sept 2005.
started Glivec 2 weeks later and have had relatively few side effects
apart from extreme tiredness and lack of energy. Prior to diagnosis
and glivec I was walking 8km a day with my dogs but now I struggle to
do 5km and if I don't have a sleep at lunchtime I feel completely
exhausted by the end of the day. Does anyone else have this side
effect and did it subside? I'm used to being really active but just
find myself drained so easily. I'm on 400mg glivec a day.
Luckily, touch wood, I haven't had any real problems with cramps apart
from the few odd times but since being diagnosed and starting glivec
I've also been taking a complete magnesium supplement that may have
helped with the cramps. I'm also seeing an acupuncturist who
specialises in blood conditions and herbal medicine. I figure the more
complimentary medicines can only assist and make the whole process
easier.
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