12 replies to this topic

[dlb65]

Been on 300 mg bid of Tasigna and after 22 months finally hit  a MMR at 0.09IU. I have had all the usual reported side effects, but the muscle fasiculations which were initially of my lower extremities (calves & feet spasm) are now affecting my hands. It is just my fingers but today at work (I am an

Anesthesiologist) it was so bad that I had to back off while starting an IV. I take Magnesium and my levels are normal. Has anyone else noted this?

[hannibellemo]

Hi, dlberger!

Evidently not, I guess. Congratulations on your response! I've only taken Gleevec and then only for a short time due to liver toxicity but my major side effect was cramping, mostly in lower extremities. However, I heard many complain on here about cramping in their hands at inopportune times, starting an IV would certainly qualify. I didn't think that was a particular side effect of Tasigna, but evidently it is for you.

Hope someone else weighs in on their experience!

[Marnie]

Hi, dlberger. . .

 

I had pretty awful foot and hand cramps while on Gleevec.  It was usually my right foot and left hand.  The fingers and toes would totally freeze up in crossed positions.  It was really odd because I could feel it coming on and then could actually see my fingers moving on their own.  They would cross over one another and then freeze into position.  I would have to physically pull them apart with my other hand.  Extremely painful.

 

They would, of course, do this at inopportune times.  The worst was riding my trail motorcycle up a rocky section of trail.  Clutch hand froze up when I needed to shift into lower gear.  Not good.

 

I switched to Sprycel due to suboptimal response, and since my switch haven't had a single hand or foot cramp.

 

Good luck.  If your cramps are anything like mine, they are painful and momentarily debilitating.  I'm glad to be rid of them.  Of course, Sprycel has its own side effects.

 

Marnie

[IGotCML]

I am also on Tasigna and have muscle fasiculations. After my CML diagnosis I was on Hydrea for a few weeks before starting Tasigna. I had very intense muscle twitching and fasiculations a few days before I started Tasigna. The twitches started in my legs and then spread through my entire body within a couple of days.

 

I went to see a neurologist about it and his thought was that the destruction of the blood cells was the cause of the muscle twitching. He advised me to start taking a MG supplement as well as increasing the amount of MG in my diet. After a couple of months, the frequency and intensity of fasiculations decreased signficantly. However, the twitching has never completely subsided, it has just gotten to a point where I barely notice it. So I am actually going in a different direction that you are.

 

Is that a pic with you and Kareem Abdul-Jabbar? I found out a few months after my diagnosis that KJA is also part of Club CML.

[dlb65]

Thanks for the feedback. I am seeing my Hematologist on Monday as it is getting worse. And yes that is KAJ (with his permission). At 6'0 I am the short one. He was very humble and inspirational. Here is a link showing the fasiculations in my calf which is constant but non bothersome like my hands. I am just curious if others have experienced this.

https://drive.google...iew?usp=sharing

[Cml38121]

Hi dld65, I have cml since 04/2014 and ssuffer from muscle twitchings since 10 months on dasatinib and then on bosulif, bodywide spread every ten seconds 24/7. I have tried many medication, nothing helped. I am done a lot of tests to see if there is not something else, but it is all clear. Can you help me and tell if you found something which helped? thanks in advance. I am really really struggling now, I am in MR4 but I can't accept to live like this, it is impossible.

[Trey]

The TKIs can cause muscle twitches.  Gleevec has caused them off and on for me.

 

I do not find fasiculations to be fascinating. 

[dlb65]

We did a fairly extensive literature review both at Stanford CC and The Hutchenson at UW and failed to come up with any studies linking TKI's to muscle fasiculations. My experiences were fairly significant while on Tasigna however I developed metabolic syndrome and was off TKI's and the fasiculations ceased. Upon starting Gleevec, my metabolic syndrome normalized but the fasiculations returned. They are not the cramping normally associated with Gleevec but true fascinations in the lower & upper extremities. I underwent a full W/U with a thorough Neuromuscular exam by a neurologist, Neck MRI and EMG. All primary NM disorders were ruled out and I carry the diagnosis of Benign Fasiculation Syndrome, not "caused" by TKI's but "temporally" related. Bottom line, while annoying, these are non pathologic.

[Trey]

Literature review often does not reveal the more unusual side effects,  Oncs don't post them as side effects because they do not believe they are.

[dlb65]

Trey-agree re:Oncs, but as an MD I have access to multiple non-peer reviewed anecdotal reports of unusual and rare AE's and we never found any reports of "true" fasiculations and while it's splitting hairs, a twitch is not the same as a fasiculation. Obviously it and many other low incidence AE's, as you stated, are not reported.

[Cml38121]

Thanks for your share, I am really concerned about these constant twitchings, fear of als. Have you found a medication that helped please? When you stopped tasigna, how long did it take to find improvement? Thanks

[dlb65]

The one issue is to rule out ALS which is fairly strait forward. They decreased but did not stop entirely as I was only off Tasigna for 10 days. They did return on Gleevec but not as frequent and far less in my hands. The cramping from Gleevec, personally, is more bothersome than the fasiculations.

[Cml38121]

That is my main concern, I have stopped tki for one week, no improvement. I have a tone of emg all clear, but I have these fasciculations all the time, and my legs are really painful too, so I don't know if I have to blame bosulif, rather than something really more serious.