New Member
Posted 24 May 2017 - 11:16 AM
I am currently taking 80mg Sprycel. I have been experiencing significant lightheaded-ness and dizziness since my diagnosis (September 2016).
Is dizziness/lightheaded-ness a common side effect from Spyrcel? Is there anything I can do to mitigate this side effect, short of changing drugs?
Advanced Member
Posted 24 May 2017 - 05:12 PM
Hi, mdh54165. I don't know if it is a common side effect but I have also experienced dizziness and lightheadedness on Sprycel. It comes and goes and really doesn't seem to be a huge issue. I have been on Sprycel since the fall of 2009 and on 50 mg. since 2012. I have experienced it on both doses.
Good luck!
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Advanced Member
Posted 24 May 2017 - 08:26 PM
There are various forms of TKI-brain fog. You have one form.
New Member
Posted 24 May 2017 - 08:40 PM
Pat and Trey: thank you for your responses. Is there anything I can do to mitigate this side effect? Diet changes? Exercise? Supplements? Dosage reduction?
I am reluctant to switch TKIs, as Sprycel is working well (albeit it has only been 9 months or so).
Advanced Member
Posted 25 May 2017 - 05:07 AM
I would stick with it for a while longer, after 15 months (approximate) on Gleevec I started to feel a lot better, it takes a while for your body to get used to its new reality.
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
Advanced Member
Posted 25 May 2017 - 08:03 AM
One other thing I've noticed in myself, at least, is just recognizing that it probably is a side effect from the TKI and that there isn't something else wrong with me, too, has made it much easier to deal with some of the side effects.
For me, it's the stress of worrying that something else major is going wrong that causes all the stress. It's a kind of variation of "that which doesn't kill you makes you strong". 
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Advanced Member
Posted 25 May 2017 - 10:13 AM
Amen, sister - except I don't know about the "stronger" part! For me, anyway.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 25 May 2017 - 10:56 AM
Advanced Member
Posted 25 May 2017 - 11:05 AM
I had the dizziness and lightheadedness on Sprycel as well. It came and went and usually the time frame got shorter the longer I was on the drug.
I thought I left that side effect with Sprycel when I switched to Gleevec, but it happened to me this past January again. I'm going to put a disclaimer first that this could be just coincidental, but it took me two weeks to realize the only thing I had changed was taking my magnesium supplement at the same time as my Gleevec. I started to separate the two by a few hours again and within two days the dizziness stopped.
I never was on Magnesium supplements on Sprycel but when I started Gleevec I had so many muscle cramps and spasms, they finally tested me and I was just below normal on Magnesium. Even with my supplements, I'm at the low end of normal.
Like I said, it could be the side effect was going to go away anyway, but I haven't gotten it again since then (knock on wood).
7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)
8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)
1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)
3/16 .014 after a wk w/o meds
4/16 Started 400mg Gleevec
4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable
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