Chronic Myelogenous Leukemia (CML) Support Group

My husband has been on 400mg Gleevec for 7 years now. The first 2 years, he had some side-effects and then for some years after that, it got less. But for the last 2 years, he is again having a lot of puffy eyes, puffy cheeks- fluid retention and also eye bleeds. So, side-effects can go and then come back again.

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/t...

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, I’ve 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 it’s 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.

Thanks so much for the input! I am definitely going to check out the webcast. Hopefully they will dissapate within a year. If I can just get rid of the joint pain, I would be fantastic! I am on the 400mg, so it was interesting to read how people on that dosage seem to be more affected by it. Again thanks!!