3 replies to this topic

[JoshLee]

Hi All,

     I just wanted to see if I could find anyone that has shared a similar experience. I am coming up on a year in treatment (Feb 3rd). At the end of December I was told that I was CCyR, which is good. However for the past few weeks I have been having a lot of side effects. I got a CBC done a few weeks ago and it showed everything to be exactly where it was two weeks before that. Hgb is around 15.0, but yet....I am still so tired. These past few days have been ridiculous. I just feel completely drained of energy and when I wake up I don't exactly feel "like a new man". I have felt like that at certain points on treatment, but lately that has not been the case. I just feel sapped. I don't want to go running back to the Dr. for something like this, but I don't really know what else to do. No fever, joint, or bone pain. I sleep probably 6-7 hours a night, which I don't know if is enough, but it hasn't been a huge problem before. I may be a little depressed, but how do you know when it is time to be concerned or when something is actually an issue? I just don't have any motivation to do anything....Do people ever "feel it" if there is a relapse or a problem or am I just cycling through side effects? Thanks for your help and sharing your experiences!

[CMLSurvivor]

I go through the same thing. Where I will have a couple of weeks where I am just tired all the time and muscle cramps. Then poof it is gone, and I feel normal again. It is very weird because it isn't like anything has changed. The first couple of time this happened, my doctor ran tests and everything was fine. For me, side affects are not on a continual basis, they come in waves, which is weird because you would think you would always have the side affects or not have them. Keep a log of the side affects and when you go into see your doctor show it to your doctor and maybe there is a pattern. Also, your doctor may be able to prescribe something to help with the fatigue.

[Happycat]

Josh,

Just went thru this beginning of January. I have occasional days here and there with fatigue, but it only lasts 1-2 days, then I'm okay.  However, starting Jan. 3rd, I hit a wall.  The fatigue settled over me that evening and stayed for a week. Never lasted that long before.  It scared me a bit.  I wasn't sure if this was a normal gleevec side effect, or a sign of disease progression.  I was checking my temperature, checking my gums when I flossed to make sure they weren't bleeding, giving myself the full body scan for bruises, etc.  it was just odd (for me) to have it last so long.   Like you, I was debating calling my onc. It finally started to abate a bit on day 6, so I just waited it out.

Of course, now that I typed this, I feel real fatigued again!  However, it's been another stressful day (worse than usual), and I just took my gleevec, which always makes me tired and sleepy the first hour or so.

HTH,

Traci

P.s.  I'm was around 9 months on gleevec when the big fatigue hit.

[CallMeLucky]

I go through this constantly, just part of the cycle as far as I can tell.  At first I thought it was a sign that something might be going wrong, but nothing was wrong.  I even came up with an alternate theory that my fatigue got worse once I got to MMR because the Gleevec didn't have as much BCR-ABL to deal with so it was effecting other parts of my system.  Probably not the case, but who knows.  Also recognize that in the beginning you are in a heightened state of stress.  When things settle down, you feel the fatigue more.