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Do TKIs ever make you feel "out of it"?


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#1 Taylor

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Posted 16 September 2011 - 08:37 AM

I found this something hard to search for, but do TKIs every make you feel kind of weird, or out of it?  I'm not talking about anything serious like disorientation or lack of coordination or slurred speech, just kind of a head-in-the-clouds sort of feeling or that you're about 5% detatched from things.  I used to get brain fog really bad when talking (it's gotten a lot better though), so I wonder if this is kind of related.  It's maybe a little like medicine head.

Anyway, just curious.  I am battling stress and anxiety, so that could be a cause of this feeilng, but at the moment I feel pretty good and relaxed, my heart rate isn't too high as if I was having that sort of problem.  I didn't sleep well last night though, which may lend a bit to this feeling.

Thanks all!



#2 saiyogo

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Posted 16 September 2011 - 09:00 AM

Well, I definitely can identify with you. I haven't done well on the tests lately (I was dx June 2011 and have been having Gleevec for about 3 month since). It isn't like I forget anything, it's just that the fact come out more slowly than it used to be. I really suspect G to have something to do with it

Luckily, other than that and maybe some fatigue, I had no other recognizable side effect, I'm waiting for my first PCR after dx next week



#3 Taylor

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Posted 16 September 2011 - 09:12 AM

Hmm, sounds like it, thanks for the input!  And good luck on the PCR!

I forgot to mention that I have just the slightest hint of vertigo sometimes, maybe that's throwing me off too.



#4 WoofWoof

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Posted 16 September 2011 - 09:23 AM

Taylor- yes to everything you said!  There are times that no matter how hard I try, I just can't totally focus.


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#5 GerryL

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Posted 16 September 2011 - 09:28 PM

I've had a bit of vertigo since being on Gleevec. Anxiety and stress also play a part in how your thought patterns go.



#6 jjg

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Posted 17 September 2011 - 04:00 AM

YES!!! Like jet lag on steroids

and sometimes it degenerates to slurred speech & gotta lie down fatigue. But much more common is the 5% out of it. At first I thought it was a lack of motivation or laziness and beat myself up about it, but as my body has gotten more used to the TKI it is not there all the time and so I'm able to recognize it as a side effect. These physical/metal fatigue things cycle and I'm noticing they correlate with feelings of stress/anxiety and also in me sadness: the emotional stuff often starts towards the end of a deep cycle of fatigue.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

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PCRU Feb 2017


#7 jjg

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Posted 17 September 2011 - 04:06 AM

Hi Saiyogo, I've noticed that stuff comes out slow too. Perhaps more seriously others around me have noticed it too. Interestingly the complex thoughts don't seem to be any more delayed than the simple things: I find it as hard to express that I'd like the blue box as I do to discuss results with my PhD students. I'm 4 months ahead of you and in that 4 months it has improved significantly. Best wishes for your PCR results!


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#8 Susan61

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Posted 17 September 2011 - 03:42 PM

Hi:  I think you just answered your own question.  Stress and Anxiety of any kind will make your mind wander, and you will have insomnia where it takes hours somtimes to get into a good sleep.  I go through it all the time, and not necessarily due to my CML.  Its just the everyday dealing with life as it is for many right now with finances, jobs, etc.  From what you are describing you definitely are suffering from Anxiety.  Are you on anything to help, or maybe see a psychologist.  I did see a psychologist for awhile when I was first diagnosed with CML, but I stopped because I could not afford all the co-pays. and truthfully she did not do anything for me that I did not already know how to do.

Sounds like you have a lot going on in your life to make you feel like this.  Try to make the time to relax, and let things fall into place.

We all worry at times, and then later we ask ourselves Why did I get myself into such a tizzy when everything works out.

You can drop me a line anytime.  I am always available if you need somebody to talk to.

Susan



#9 Happycat

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Posted 17 September 2011 - 08:08 PM

Interesting that you describe vertigo, Gerry.  I get vertigo off and on, but mine I believe is connected to my neck injury (whiplash) - now some 2 yrs ago, actually two years this coming week.

The vertigo started to get really bad last fall, and downright alarming last winter.  I had one night when I drove back from PT and I literally felt like I was driving drunk.  I had to concentrate really hard to make sure I didn't miss any movements, like someone walking on the roadside.  Scary!  I've had plenty of days since that accident where I felt woozy, had difficulty concentrating, and just felt out of it.

Anyway, the neurologist told me the vertigo I was feeling was due to my neck muscles spasming.  There are motion receptors in the neck that connect with brain, eyes, and ears.  When the neck muscles spasm, it can cause vertigo and wooziness.  (And difficulty concentrating, if you can believe all the literature on whiplash injuries.)

Now your comment make me wonder if Gleevec can cause neck muscles to spasm like it does my legs, feet and hands.  I would never have connected Gleevec with neck spasms, but maybe it does happen.

Traci



#10 GerryL

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Posted 18 September 2011 - 05:22 AM

Hi Traci,

My vertigo (from Gleevec) seems to mainly occur when I tilt my head back to look up or when I'm doing yoga and I'm laying down on the floor and then have to sit up. I'm thinking it might be from the fluid retention in my sinuses - doesn't happen all the time, but possibly when I've let the fluid build?

Can I suggest trying a celery seed supplement for the muscle spasms - it seems to help me, I only take one tablet a day (at the other end of the day from the Gleevec (just to be sure)). The spasms came back fairly quickly in my calves when I stopped taking it. You'll only need to take it for a week to see if it works, it kicks in pretty quickly.



#11 jrsboo

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Posted 19 September 2011 - 11:58 AM

Dear Fellow Vertigo sufferers,

Your inner ear has three channels.  In one of these channels, some lovely little crystals sit on a "sticky pad."  The crystals are used by the body to sense movement, up and down, side to side, and front to back.  For some unknown reason, for some people, the sticky pad becomes unsticky, and the crystals go floating around the channels.  Those crystals are now hitting the tiny hairs inside the wrong channels.  And that causes the brain to get two different signals.  The signal from the inner ear, saying that the world is tilting, and the signal from your eyes saying that it is not.  This makes the brain very confused, and you feel dizzy, and may even become nauseated and may need to vomit. 

There is a wonderful fix for this horrid state: figure out which ear is affect by lying on the edge of the bed with your head hanging off the end (on your back).  Turn your head to one side and keep your eyes open.  If the world starts to spin, you have found the affected ear.  Your eyes will be rotating, trying to match the movement of the crystals.  This next part is hard.  Keep your head turned that way until the world stops spinning.  You will feel utterly horrible during that time period, usually takes only a minute or two.  Once the world has stopped spinning, slowly over the course of ten minutes turn your head to the front (so that you are looking at the ceiling) and then to the other side (so that you are looking at the opposite wall you started from) and then flip your body over holding your head in the same position, and then continue to turn your head until you are facing the floor.  Congratulations,  You have put the crystals back on their proper pad.  Now very slowly (did I say slowly, I meant it!) sit up and stay in an upright position for a couple of hours.  Prop yourself up on a couch and watch tv.  Hopefully this has worked.  If it has, it is instant!  As soon as you sit up you will see that the world has stopped spinning and you no longer wish to vomit.

How do I know?  The massive vertigo attack I had two years ago, just prior to being diagnosed with CML.  Had me in convulsions at the lab, and on my way to the ER.  Six weeks later, and finally able to see a neurologist after having brain scans and MRI's and a ton of work and testing, by which time the disconnect between eyes and ear had my poor brain so tired, I was unable to read, unable to speak without stuttering, and terrified that the docs were now talking about MS, after ruling out a stroke or a brain tumor.    Nice Neuro doc, had me do the hang the head trick.  I sat up and could speak clearly and felt completely fixed.  It was a miracle.  Since then have had to do the slow turning thing a couple of times.  In fact last night was one of them. 

Hope this helps someone. 

Caroline



#12 HeatherZ

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Posted 19 September 2011 - 01:12 PM

Taylor -yes, yes yes!  Just like the other side effects, the perios of brain fog come and go.  I jhave been having a really bad time of it for the last few weeks - inability to focus, forgetting everything, can seem to "find" the word I am looking for in normal conversations, and even forgot the dog was outside and could not figure out what was whinning for a couple hours.  Even if you aren't struggling with anxiety the brain fog can give it to you.  It is really hard to try to discipline your kids when you end up not being able to choose the correct word and end up looking like a total fool   Hang in there, you are not alone.



#13 GerryL

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Posted 19 September 2011 - 08:12 PM

Hi Caroline,

Prio to starting Gleevec I've experienced vertigo just rolling over in bed due to the issue you describe. There is another set of excercises for it - you sit on the side of the bed with your arms crossed, hands on shoulders and you gently fall onto your side, sit up and do the other side. You do this around 5 times on each side for a day or two and whatever bits that are floating around go back to where they should be.

Current vertigo is different again, I think mine is related to the fluid as the exercises don't work for it and it comes and goes.

Gerry 



#14 Taylor

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Posted 20 September 2011 - 11:37 AM

Interesting replies on the vertigo!  I always had another, separate and distinct feeling that I thought was kind of weird.  I would walk down the halls at work and I would always feel like I wanted to just fall over, or that gravity was pulling in me extra hard, but in a weightless way.  I'm not sure if that makes sense, but after I had a few mild vertigo attacks, and seeing some stuff here, I realize that those symptoms were just the slightest, barely perceptible hints of vertigo.

I actually had a moment today where I leaned back and felt way off kilter for a split second.  Sometimes I also have moments where my brain "feels cross-eyed"--you know the feeling when your eyes are crossed hard for too long?  It kind of feels like that but back in my head.  I thought it was part of some anxiety symptom, but I wonder if that's some weird manifestation of vertigo.  I'll give these exercises a try and see if it helps me, even though I don't have anything too severe.



#15 GerryL

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Posted 20 September 2011 - 07:01 PM

Hi Taylor,

You have similar symptoms to me in regard to my Gleevec version of vertigo. 



#16 ROM1212

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Posted 20 September 2011 - 09:47 PM

Taylor,

My answer is yes, although I would answer it differently than others.

This past weekend I was hiking and rock climbing with my son on a beautiful day and I noticed a feeling I have experienced at other times.  While I was enjoying myself, it was like some of the joy or emotional exuberance was removed from the experience, almost like having 5% of the fun removed from it.  I am not depressed and am generally a happy person, so for me this lack of emotion is a little out of character.

I have noticed this at other times, and think it might have to do with being physically tired.  It seems to be occur for me in the afternoons and evenings. 

On the contrary, when things are going bad I seem to not be missing "it", in fact it seems like I'm feeling those things 110%!



#17 Lizzybee

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Posted 24 September 2011 - 09:56 PM

I had major brain fog and lack of concentration pre-diagnosis. It's gotten much better since I started Tasigna, and I was hoping that eventually it would go away altogether. Sounds like maybe it won't. :-(






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