Hi, my name is John. I am 46 this month and I was diagnosed in Feb of
02 (on my oldest 16th birthday). Have been on 400 mg since March of 02
and went to 600 mg in Oct. of 04 and finally reach complete remission
in April of 05. I too have many of the side effects that you mentioned
and this is what I have found that helps me. First a little more
background: I am also an Asthmatic who is allergic to aspirin and
because you are not supposed to take Tylenol and Gleevec, it makes it
hard at times to take anything for the normal pains let alone the pains
from Gleevec.
I will say that without the support of my wife and 4 (3 boys and a
girl) kids, I would have been lost. They have given me so much support
and understanding. I love them lots. I too was told that the course
would be 3 to 5 years. Now they are saying that evidence indicates at
least 4 more years if not 10. Now I think about maybe being able to
see my youngest (daughter) graduate from high school in six years. My
family never has given in to any of my complaints and is always making
me laugh and enjoy life.
Well enough of my whining. This is what I have found works for me and
maybe these will help you.
Diarrhea - I do not know if you drink or eat a lot of dairy but what my
doctors and I have figured out is that some how I am now lactose
intolerant. I tried the enzyme pills but this for some reason made me
very sick (the one and only time I ever threw up in the 4 plus years of
taking Gleevec). So now I watch what I eat and try to make sure I eat
less dairy. I also drink the "Dairy Ease" milk by Land-O-Lakes.
It has the enzyme already added. Why I can take this I am not sure. I
also try to snack on pretzels as filler. I still have the diarrhea but
with Imodium and the reduction of dairy I have it controlled most of
the time. I also eat low fat yogurt everyday, which goes against the
dairy issue, but I think it helps because it gives me those good
bacteria in my intestines.
Muscle - Bone Pain - I have not found what to do about this because I
certainly can't take anything aspirin based and the doctors were not
very willing to let me take Tylenol. The best I have found is to keep
active and walk and drink lots of fluids. I think I drink with coffee,
milk, diet soda and water, well over 120 ounces of fluids a day. I
make sure that at least 50% is water. This seems to help. I still
have bad days but they seem to be coming further and further apart. I
do have the edema sometimes in morning.
Muscle Cramps - This has probably been my worst but lately has been
better. My kids give me trouble because these usually happen at night
and they know it is happening because I will wake up screaming " No!
No! Oh [EMAIL PROTECTED] Oh [EMAIL PROTECTED] My blank, my blank" and the blank
is where the
cramp is ("My foot or My thigh"). Most of the time it is the arch
of my foot. And the family comes running and try to help work it out.
My worst was both feet, both calves and one thigh at the same time.
That was real funny to the kids. Anyway what I have found that helps
is to eat lots of fruit, especially bananas and to drink tonic water
for the quinine. The Tonic water really has help but you need to be
careful because it can mess with your blood counts. When I first
started the tonic water I drank about 4 ounces a day. Now I drink
maybe 4 ounces a week or when ever I feel the cramps coming on.
Insomnia - This has not been too bad accept recently but I attribute
that to a second child about to head off to college, tax time, the fact
I am spending so much for health care (95 % on myself), and the
switching from bone marrow biopsies every six months to the FISH and
qPCR test every six months. I was comfortable with the BMB and the
reading of the results and now they were going to do a new test. Just
one of those mental things I guess. I have always tracked the insomnia
to stress so I vent to the family, say something stupid and we all have
a good laugh and then I am able to sleep.
Nausea - I have that too but have been able to deal with it some how.
Mostly by splitting my dose, which makes no sense because Gleevec is a
24-hour pill so by all rights after a delay of maybe a day or so the
Gleevec level in my blood should be pretty constant. Anyway, I have
always taken my Gleevec between 9:30 and 10:30 at night because this
way I am asleep when the side effects are worse. I always found that
taking them at dinner did not work for me because I felt really bad.
So I eat a snack of some kind before bed and then take 400 mg. Then at
10:30 or so in the morning, I take the other 200 mg, again with a
snack. I tried taking all 600 mg at night but that made for a very bad
morning. I would not even think about stopping the Gleevec but maybe
talk to your doctor about taking 200 mg in the evening and 200 in the
morning. Maybe that will help. One thing I also found is that I have
gained nearly 30 lbs since I was diagnosed. I attribute this to the
Gleevec somewhat but also to the fact that I can keep the Nausea in
check but always snacking, mostly good stuff, fruit and veggies but I
do like my cookies and milk. (Ha Ha). I have also found that if I take
the vitamins, that this has increased my nausea. So I try to keep that
to a minimum and try to eat the food that will give me the same
vitamins.
Being Tired - This is one I have not figured out what to do other
than I do drink coffee in the mornings, exercise as much as possible
and listen to my body. If I seem really tired, I will take a nap or
not get up when the alarm goes off. I figure that when I feel really
tired, that is my bodies way of saying we need to shut down for a while
and do some mental repairing by sleeping, so take a nap.
As far as stopping the Gleevec, I agree with everyone else and that is
DON"T. When you look at it, I would much rather have the side
effects than the alternative.
One thing I will say is to try to do the stuff that makes you happy as
much as possible. I have noticed that when I start feeling the side
effects a lot or just feeling down, my family always seems to come up
with something we have to do, like go to the movies, go to the zoo or
maybe just have a game night. Generally I start out having a bad time
but in the end I am always feeling so much better that I can handle any
side effects because I realize that I am alive and having fun. The
mind is a very powerful drug in itself.
This, in a very long message is what I have found worked for me. So
hang in there and keep a positive attitude. Keep looking for and
trying other ideas to see if you can reduce the side effects and make
sure to talk to your doctor about anything before trying it (like the
tonic water) so as not to cause more problems for yourself. Remember
we are all in this together and together we shall defeat this ugly
beast.
Good Luck and God Bless you all!
John
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