... tired of being tired, will this continue? I could use a nap a few hours after waking up most days. Started on Gleevec March 2012, working great!
I know exactly what you are talking about! I am 61 years old and have been on Imatanib (Gleevec) for 4 years. This is how I deal with the side effects.
No. 1 For me anyway, dehydration causes fatigue; I'm talking about can't-hardly-put-one-foot-in-front-of-the-other fatigue. The fatigue, for me anyway, slowed my thought process so much that all I wanted to do was nothing. When I drink plenty of water, even when I am not thirsty, I do not have fatigue. Period. I found this to be the single most important thing for combating tired. Have a water bottle with you at all times. Inform the people you live and work with that you need this. So when your brain is foggy and you can't think to do it yourself, they can remind you. Every cell in your body needs this. I wish someone would have told me this when I was first diagnosed. It took me almost two years to figure this out. This drug we put in our bodies to combat the CML is poison! Plenty of hydration, it seems, dilutes and washes it out. This is a good idea even if you don't have CML.
I take a B-Com viitamin every night before I retire. This vitamin turns my urine bright yellow. If my urine is still the same color at noon the next day, I better get to drinking water until it is almost clear. This little excercise really helps me be cognicent of my level of hydration. DRINK, DRINK, DRINK!!!
No. 2 I take a multiple vitamin along with 100 mg of vitamin B-6 and a B-com supplement, daily. This seems to counteract what Imatanib does to my brain.
No. 3 I take 1200 mg of St. John's Wort to deal with the depression, which I believe is caused by Imatanib. Be careful here. There are some studies that show this decreases the level of imatanib in your blood. The University of Pittsburg, as far as I can find, has the only lab in the US which can do imatanib plazma blood level test.
No. 4 Be sure your hormones are balanced. Nothing will screw up you life like low testerone or thyroid disease.
No 5. I take Zantag, Hyomax and Ranatadine to combat the effects to my stomach and intestines.
No. 6 Get enough sleep. Since I got this disease, shorting myself on sleep will screw up my day more effectively than anything else. Sometimes I pop a melatonin befere going to bed at night. This helps me to sleep more soundly.
No. 7. I'm not fat. I'm 5' 10" and weigh 181 pounds. I eat what I need to in order maintain the weight. If you are overweight remember it takes extra energy to carry that around; energy which you don't have right now. So if you need too, get off your butt and lose some weight.
No. 8 Cut the use of illicit drugs, alcohol and tobacco. These will do nothing to enhance life. They will only add to the chaos.
No. 9 Remember there are doctors who memorized their way through medical school without having a good idea how this all works. It you have one like this find different one. Take charge of of your own care. Be introspective as to what is going on in your body and learn how it works As I said, I am 61 years old. I am not tired. Most days I can't wait to get up and get going. These things that I do to enhance my life may not do thing to help you. I found them by trial and error. Most of the blogs like this are populated with depressing posts from folks who bemone this disease. I am not one of them. There are all kinds of diseases worse than this one. However during the first years of this no one could have convinced me of that. You can decide to roll over and accept to typical effects of this disease. I'm glad I didn't. Life is great!!
PS One more thing. If you do what you do, you will get what you got. So if you don't like what got, do something different!!
I was just diagnosed last summer. I first was on Tasigna, but it gave me heart problems/palpitations, skipping beats-yikes! It was also difficult to take with timing and meals. The gleevec seems pretty easy to take, one oer day with a meal. I have excruciating cramps in my feet/toes. It seems my hair is thinner. I'm afraid to take anything else at all, so it was good to see that you are supplementing. I want to take hormones and vitamins, so maybe that will help. Some days I forget I have any disease at all. I'm not tired, but I am sure I don't drink enough water after reading your post. Thanks so much.
- Gleevec Information for Consumers
- Gleevec Information for Healthcare Professionals (includes dosage details)
- Side Effects of Gleevec (detailed)
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