After being on Sprycel for almost 1.5 years I just started, the last few weeks, to experience some shooting bone pain in seemingly random areas that lasts just a few seconds then quickly subsides it is not super painful but just a bit irritating. I have had it in my lower back, ankle, wrists, forearms, ect. I am 29 and I workout 5 days a week. Happens to me maybe 20 times a day total I just wanted to know if anyone else has had this? Something to be concerned about or just another annoying side affect of Sprycel?
Bone Pain and Sprycel
Started by
JohnFromChicago
, Apr 05 2017 07:10 PM
9 replies to this topic
#1
JohnFromChicago
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Posted 05 April 2017 - 07:10 PM
Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
0-27 Months Rx: Sprycel 100mg
Current Rx: Sprycel 50mg
0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.05%
24 Month PCR = 0.04%
27 Month PCR = 0.01%
#2
tazdad08
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Posted 05 April 2017 - 08:04 PM
Another annoying side effect.. I was just telling Frogiegirl about my random sharp pains from Sprycel. They go away just as quick as they hit. Some times they will hit so hard that you will literally stop in your tracks.
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#3
Frogiegirl
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Posted 05 April 2017 - 09:35 PM
Yep that is crazy because I just recently started sprycel and asked Jimmy (tazdad) what to expect or what he experienced and he said almost exactly as you. So far no shooting pains, some weird vertigo or dizziness and general body aches. ...no shooting pains as of yet......
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#4
JohnFromChicago
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Posted 05 April 2017 - 09:46 PM
Another annoying side effect.. I was just telling Frogiegirl about my random sharp pains from Sprycel. They go away just as quick as they hit. Some times they will hit so hard that you will literally stop in your tracks.
Thanks so much for the reply. At what point during your time taking Sprycel did they start? Did they every stop for you? Luckily mine don't seem quite as intense as yours but they are definitely irritating to say the least haha.
Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
0-27 Months Rx: Sprycel 100mg
Current Rx: Sprycel 50mg
0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.05%
24 Month PCR = 0.04%
27 Month PCR = 0.01%
#5
JohnFromChicago
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Posted 05 April 2017 - 09:51 PM
Yep that is crazy because I just recently started sprycel and asked Jimmy (tazdad) what to expect or what he experienced and he said almost exactly as you. So far no shooting pains, some weird vertigo or dizziness and general body aches. ...no shooting pains as of yet......
Thats is pretty crazy haha. I had some dizziness too, maybe 6 months in and it lasted for almost 3 weeks I thought it would never end but it finally did. That was probably one of the worst side affects. None of my side affects have ever lasted longer than a few weeks though so I figured I would wait before I complain about this one haha. Hit the 3 week mark though a few days ago.
Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
0-27 Months Rx: Sprycel 100mg
Current Rx: Sprycel 50mg
0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.05%
24 Month PCR = 0.04%
27 Month PCR = 0.01%
#6
kat73
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Posted 06 April 2017 - 10:33 AM
I get the weird stabbing pains, too, just as you describe, but not nearly as many or as often. They just started a few months ago, and I've been on Sprycel for about 6 years.
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.
#7
JohnFromChicago
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Posted 06 April 2017 - 04:33 PM
I just couldn't help myself since my oncologist office is just a few blocks from my work office I was able to go in real quick and get labs done on my lunchbreak. Results all normal 6.4 WBC. I don't even want to know how much the labs costed me but oh well no price on a piece of mind right.
Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
0-27 Months Rx: Sprycel 100mg
Current Rx: Sprycel 50mg
0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.05%
24 Month PCR = 0.04%
27 Month PCR = 0.01%
#8
Bad Blood
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Posted 11 April 2017 - 08:19 PM
I had TERRIBLE pain in my leg (just my left leg) while on Sprycel. When I switched from Sprycel to Tasigna, the pain went away. In the last few months, the pain has returned every so often. It's really weird, but it happens! I've tried talking to my doctors about it, but no one seems super concerned. I've had an ultra sound done to rule out a blood clot. Nothing. The pain is definitely there.
#9
Frogiegirl
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Posted 13 April 2017 - 08:54 AM
anyone experience horrible bloat on sprycel??? This is ridiculous! anything I can do? I know on tasigna, rolaids and tums and that sort of thing were off limits, but I didn't really need them.....
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#10
mlk210
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Posted 13 April 2017 - 09:20 AM
Yep that is crazy because I just recently started sprycel and asked Jimmy (tazdad) what to expect or what he experienced and he said almost exactly as you. So far no shooting pains, some weird vertigo or dizziness and general body aches. ...no shooting pains as of yet......
I had that weird vertigo and dizziness thing on and off while on Sprycel my first year. I hated it because it almost seemed like I was in a fog but I functioned completely normal. It would last a few weeks and then go away for a few months and then reappear again. Eventually, it did stop but then I had to go off Sprycel. I never had the shooting pains.
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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