15 replies to this topic

[max1m]

First post here. I was diagnosed in Mid May with ~98K WBC count. Onc. started me with 400mg gleevec. Things were going well for 6 weeks with WBC down to 3.5 and RBC hovering around 4 and platelets above 100. Then suddenly I had dizziness / fainting last week. The blood sugar that week had been a bit low so I monitored it for a couple of days and it seemed alright but still dizziness. The on-call Onc. asked me to put the Gleevec on hold over the long weekend. I will talk with my regular Onc. to figure out the next steps. Does this typically happen on Gleevec? Onc. had discussed a break if my numbers went down the last time we talked but this doesn't seem related to the numbers and looks more like a side-effect. Feeling a bit nervous about the situation. Hope I can tolerate Gleevec again after this break.

[Trey]

This can happen, especially during the first year after starting treatment.  Gleevec can alter blood glucose levels, and also cause endocrine issues.  These normally sort out after a while, but it certainly could be the cause of the dizziness.  As with all medical issues, do not completely rule out other issues, so watch for signs of non-CML treatment issues. 

 

You should be able to stay on Gleevec but you may continue to have minor dizziness for a while. 

[max1m]

Thanks Trey! Yes, I do feel like my blood sugar is fluctuating as I feel better after having something in the morning. I have an appointment tomorrow for them to determine when to resume Gleevec.

[Gail's]

I had dizziness too when newly on gleevec. The culprit for me was taking simvistatin with it. Once I stopped the statin, no more dizziness.

[max1m]

Gail, hmm, I am not really taking anything else besides Gleevec. I met with the oncologist today and they are going to keep me off it for a week, do a CBC and then most likely continue again. My dizziness is better but not completely gone. I am wondering if it could be some kind of viral infection that might be going away slowly. It is really hard to tell whether it is a side effect or something else :/

[kat73]

Not to muddy the waters here, but my good friend followed by my mother-in-law both had an inner ear virus that caused dizziness for about 3 weeks, about a month ago.  This was in the Washington, DC area.

[max1m]

kat73, you may be on to something. I have something going on with my ears. They are flush red sometimes during the end of the day. I will bring this up during my next appointment. I had similar symptoms early last year ( before I was diagnosed ) and it took me more than a week to recover from that. Thanks!

[kat73]

Hmm.  Don't know about the red ears!  Remember, the virus I'm talking about was INNER ear.  They couldn't feel anything, just had vertigo and felt bad, tired.

[chrissy778]

Max, I have been on Gleevec since diagnosed in Aug 2013 Last summer I was so dizzy. I went to my primary, two ears nose and throat Drs, my dentist who did a panoramic,  a orthopedic Dr who did a neck x ray, a chiropractic and then head a head MRI from my primary. They never found anything it just went away on its own. It lasted about a month of dizzy holding on to stuff feeling sick from anxiety. My white count is always low but I just checked and at the time it was 3.2 It will get better and the dizziness will stop. I never stopped my Gleevec

[CallMeLucky]

I also had the red flush ears on Gleevec. Most likely you probably don't have a virus. You are likely getting used to Gleevec and having some side effects, red count and hemoglobin could also be dipping which can cause some dizziness.
This is also still new to you so stress of diagnosis can cause these symptoms as well. End of day it is probably Gleevec, if you are taking it morning or during day, try taking it at bed time and see if you can sleep through some of the side effects. That seemed to help when I was on it.

[max1m]

kat73, chrissy778, CallMeLucky, thanks for your inputs. I did feel the dizziness earlier not the flushed ears, so I thought about the ear infection. After reading chrissy778's comments, I feel like I just have to give the gleevec time to overcome this side effect. I have been taking the gleevec after dinner time. Hopefully, will start it again on Friday after a CBC. The doctor thought that since I was put on a break might as well make use of it to improve the nuetrophil count which was 1.5 when measured last week. The other numbers were much better: WBC 3.5, RBC 4.2 Platelets up to 169 from 103.

[max1m]

Update - I saw my regular physician today and she has ordered tests for Vitamin B and Thyroid for the dizziness. The physical exam went okay and she didn't find anything wrong with me. 

[max1m]

I finally felt better on Thursday/Friday. Also, my iron came out low (7), so my doctor told me to take some iron supplement. Vitamin B was ~600 and thyroid around 0.55. I was allowed one more day off Gleevec which I gladly took as my blood counts were more or less the same besides platelets which went up to 225 and neutrophil was up at 1.7 . I resumed Gleevec 400mg on Saturday. Today, I feel slight dizziness/heavy headedness/fatigue again. So, I think it was the Gleevec which was causing it after all, just like chrissy778 mentioned. I hope it goes away, keeping fingers crossed.

[Trey]

If you do not split your Gleevec dosage, you should.  Take 200mg morning and 200mg evening.  This usually reduces side effects.  The dizziness will also get better over time.

[max1m]

Trey, thanks for the tip. I will give that a try. Do you order 100mg Gleevec for that or just cut the 400mg in half?

[Trey]

At first I cut them in half, but then switched to 100mg which are much easier.