5 replies to this topic

[VickiW]

Morning everyone!

need your input.  I have been on Sprycel now since 2010. (Gleevic before that).  Anyway, I have dealt with all the other "normal" cycling stuff like cramps, muscle twitches, and the rest but I seem to have developed some stuff that is cycling only in intensity now, never quite going away.

 

I developed tremors (shakes) a long time ago, sometimes violent but mostly just like I just slammed several espressos in a row.  Thing is they don't go away (aka cycle) anymore.    I've had the sensory neuropathy for years and taking Neurontin (feet are also getting REALLY bad now too, connection?).  My new PCP is thinking that what I was assuming was just motor neuropathy from the Sprycel, just might be something more ominous.  Thing is even tho she has a good background in neurology, she is not that familiar with our drugs and all the crazy quirks we can have.

 

I've already had the MRI and the results were negative (yea) but it doesn't rule out other potential nasty things in her mind like Parkinson's.  

 

Guess what I need to know is have any of you had tremors and/or balance issues after being on Sprycel for a while that does not just "cycle" but are an on-going problem???

 

Thanks in advance for everyone's help.  We really are all in this journey together!!!!

[hannibellemo]

Hi, Vicki!

 

I'm so sorry for all the uncertainty you are experiencing right now! As you know, my first night on Sprycel was heralded with severe tremors. I continued to have those with lessening intensity over the next 6-8 weeks. I also experienced minor neuropathy but that also disappeared.

 

I've felt, on occasion, that the tremors were going to make a reappearance but they never quite materialized, just lurked in the background - it was more a prodromal sensation then anything. 

 

I definitely believe that this is a Sprycel thing, or at least began as a Sprycel thing, but have no clue what neurological trigger there could be. There aren't many of us, but a few have pointed tremors out as early side effects.

 

Please keep us up to date as you learn more.

 

Good luck!

 

Pat

[Trey]

It is the Neurontin.  Maybe Sprycel adds to it to some degree, but not the major player here.

 

Neurontin:

"Common Side effects:  Drowsiness, dizziness, loss of coordination, tiredness, blurred/double vision, unusual eye movements, or shaking (tremor) may occur."

 

If it were me, I would not be taking it. It is not even designed for your specific condition (neuropathy) unless it is caused by conditions such as diabetes.  Although it can relieve nerve pain, it does not help the underlying condition.  But it is mainly for people with epilepsy.

 

http://www.pfizer.co...etail/neurontin

Edited by Trey, 12 September 2014 - 05:31 PM.

[VickiW]

Hi guys,

thanks for the input, I really appreciate it.   I am actually nearly 8 yrs into my CML journey (with several big speedbumps along the way) so i am long past the initial adjustment period of both Gleevec and Sprycel.

 

 About the Neurontin.  The tremors actually started before I started taking it.  As we all already know, one of the first clear symptoms of CML is sensory neuropathy, which I had and that one of the potential side effects of Sprycel is neuropathy, BINGO.  It wasn't that bad until I was switched from Gleevec to Sprycel.  Within months it became pretty painful and slowly getting worse.  

Since the neuropathy is a side effect of the CML as well as a side effect of the drug I need  to control it, removing the "underlying condition" clearly isn't an option since no one has figured out quite yet how to cure the CML.  

 

BTW-Neurontin, is a common,  off label use for the control of the symptoms (aka pain and burning) of neuropathy.  I refuse to take anything but the lowest dose I can and still function.  I can barely walk with it, without it, it would be wheelchair time. So stopping completely?  Not a choice!!!  Nope!  Not yet anyway. Maybe we will at least  find a better answer for the pain 

My Onc, who is really one of the great ones when it comes to blood cancers, put me on it.   You can learn more about using gabapentin by going to the  Neuropathy.org site.

 

It sounds like so far no one else is really having the same problems, darn. (we've already taken into account known side effects from my current drugs) Oh well, guess I was hoping there was just another "something" that the onc's and pcp's didn't know about yet.  Guess I just need to be patient and walk it thru.  Looks like it's probably off to the neurologist next, whoopee.

[VickiW]

UPDATE:

Hi everyone,

ok, so, it is now November 2016.  I have been doing TFR (treatment free remission) aka no TKI drugs since mid April.  Also changed is I was dxd last year with T2 diabetes concluded to have been caused by the damage (now known to be a potential side effect just like happens with other chemo drugs) to my pancreas done by the long term consumption of the Sprycel (and possibly the Gleevec before that?).  

I mention the T2 because one of the main side effects of this condition is also sensory neuropathy. (I was also dxd with motor neuropathy some time ago).

Anyway, I still have problems with neuropathy BUT the symptoms have gotten much milder and the severe essential tremor on the right side I developed has disappeared!  Since stopping the Sprycel I have also gotten my blood glucose under control to the point that I am now able to control it with diet and no longer have to take medications for it.

[kat73]

There is only one thing to say:  Wow.  However the CML/TKI's and your problems are intertwined, I am so happy for you that things are improving!  I think one of the most depressing aspects of our CML life is the feeling that things will never get better because we are trapped into a lifetime of mandatory drug treatment.  It is a struggle to get legitimacy from the medical world about how we feel, it is a struggle to figure out whether connections are real or imagined, and it is a struggle to figure out what the heck to do about it anyway, when there is no alternative yet.  While everyone is busy keeping an open mind, we patients often suffer for months or years with a daily presence of misery.  A person can feel pretty alone, fighting every day for a semblance of normalcy, all by himself, basically.  All because "nobody knows."  Ain't that the truth.