
Chronic Myelogenous Leukemia (CML) Support Group
Chronic myelogenous leukemia affecst the balance of blood cells in the body, disrupting the normal balance. The cancer cells eventually begin to outnumber and push out the good cells, and could lead to anemia and easier bleeding/bruising. If you or a loved one is diagnosed with CML, this is the community to discuss your experience.

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I am wondering how long the side effects usually last. I know that everyone is different, and how their body responds isn't the same. I hate the side effects, and they have been a problem for me since I started. I was a little shocked to find out I have to stay on the Gleevec for 10 years total even when I get to "full remission". Any advice on how to deal better with the nausea and joint pain (those are my two biggest ones) would be appreciated. Also I am wondering if anyone else gets these crazy "palpitations"? Sometimes it feels like my heart is going to beat right out of my chest! Immediately after I have a spike of anxiety. It doesn't last long, but it is very uncomfortable. Thanks for any feedback!
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The bone pain went away within the first year of Gleevec and never came back. He does not have any nausea but others on Gleevec do.
Carolyn, Dr. Brian Druker's (Gleevec inventor) nurse gave a very good webcast on Gleevec side-effects for the LLS and you can read the free transcript on the Net.
http://aoic.net/cancersyspagesnb/transcripts/lls/35/aawe.pdf
I have also given some of her advice from the webcast transcript below. Hope it helps.
Actually, we have been told that my husband needs to be on Gleevec indefinitely until a cure is found and he is already 7 years on the drug. Even after 'full remission', there are still some malignant cells present and the disease can come back after the drug is taken off. But, please stay positive. Doctors are doing research and hopefully they will find a cure for CML.
Best Wishes,
Anjana
wife of Royston
d/x Jan 2002
400mg Gleevec
PCR 4-log reduction
Nausea and Vomiting
These do occur with Gleevec, especially at first before you learn how to take it.
It is very important to take Gleevec after a substantial meal. It is also important
to drink at least 8 ounces of water afterwards. You do not want the pills to get
stuck in your esophagus where they can cause irritation. It may be helpful to
divide the dose; for example, you can split the dose into two 300 mg doses if
you are on 600 mg/day. You can usually decrease nausea and vomiting with this
approach. Anti-nausea medicines are available if necessary. Recently, Ive been
getting questions about the new dose formulations because Gleevec is now
available in a 400 mg tablet and a 100 mg tablet. A few people report more
problems, particularly with the 400 mg dose. This may be because its concentrated.
And this is all the more reason to be sure to eat plenty of food before taking
the Gleevec, and drink it with plenty of water. If the 400 mg tablets are problematic,
ask the doctor to give you the 100 mg tablets and you can split those up
if you need to.
Muscle Cramps
These are pretty common, usually in the hands, feet or calves. Taking calcium in
divided doses of approximately 500 mg each, taken two to three times a day,
often helps them. Low potassium can also contribute to muscle cramps. If you
are on a diuretic, this should be monitored.
Joint and Bone Pain
This can happen, especially when patients are first on Gleevec. It can be quite
severe, but it usually [indiscernible] within days, and in a few patients it goes on
for weeks. Anti-inflammatory drugs such as Celebrex, ibuprofen in moderation
(as this can affect liver enzymes and cause upset stomach), are helpful. Rarely
have short-term narcotics been needed.