61 replies to this topic

[gerry]

Hi Gail,

 

Gradually the good days start linking up

[Gail's]

Thanks Gerry. Isn't it funny, I posted twice in the topic of brain fog!

[gerry]

Sometimes it doesn't appear to have got the comment and when you redo it the first one appears. Brain fog happens to the LLS board sometimes. ha ha

[Terran]

You all make me feel so much better. My onc also was less than concerned. He does not think I need to see anyone just yet. But I'll make the appt on my own if I have to. This area is severely under researched. Psychology uses things like video games to quantify these types of things. Play a game before you start your meds and another a few weeks later. Does anyone have a child/grandchild looking for a PHD thesis? And I am feeling a little better every day. Namaste, and Jesus bless you.

[KerriD]

I was diagnosed 4 years ago and have been on Tasigna the whole time. The CML has been undetectable  for 3 1/2 years the...brain fog has been the worst part.... for me..by far.  I recently went to see a psychiatrist about it and he prescribed an attention deficit disorder drug called VyVanse.  It has helped ALOT.  I would highly recommend it.  I am 50 years old , work full time and a single mom of 2 teenaged boys.  My life has been chaos due to brain fog the last few years.  I am grateful to have found something that helps.

 

Kerri

[Aussie Dave]

I can certainly relate to this. What I really notice as well as forgetting words or peoples names is dyslexia in my typing. I also get headaches now which I never used to get.

[Billie Murawski]

Aussie,

    I forget names all the time (words too) but what has gotten really bad is numbers, I'm constantly dialing wrong numbers and balancing my checkbook is awful sometimes I have to put it away and do it at another time.

   Gail, I noticed the double post and right away I thought That's our Gail she's back. I'm so glad you're feeling better. I have a hand held solitaire game which I play all the time yesterday I tried playing it and it took me about 2 minutes to realize I was using my calculator.

[Gail's]

You crack me up Billie! Unfortunately the last two days have been hard. Muscle aches and foot spasms, and tired. I'm going to add calcium in the morning to see if that helps. Currently on magnesium and Vit d in the evenings when I take gleevec. I think that's helped a little but hope calcium helps.

[Terran]

I am going to look into vyvanse or concerta. But this week has been better. My daughter saw a neuropsychologist that recommended vyvanse for her learning disabilities. He uses a video game to gauge the effectiveness.

[Billie Murawski]

Gail, Magnesium really helped me with muscle cramps from gleevac. I take different meds and probably a lot of my aches and pains have something to do with that. Last summer I had to start taking another bp pill along with the ones I already take and it seems like my fatigue is a lot worse also I think it might be causing my headaches too. I hate bp meds I have tried so many but the s-e are miserable.

It seems like this last birthday brought aches and pains. Remember when we used to say our body is a temple, well now I say my body is a walking barometer I can predict the weather better than the weatherman. Hope you feel better soon.    Billie

[Billie Murawski]

Hi All, Just wanted to share this, I was just making soup and I got my wire whisk out to stir it, after stirring for a couple seconds it seemed like something wasn't right , I was stirring my soup with a beater from my mixer .  Billie

[pammartin]

Billie, you got it out of the kitchen, it was a kitchen tool, and it probably worked very well.  The way I look at it is you didn't have Ron's drill with his paint mixer in your soup pot. 

 

It's a win win

[melissaj35]

I was diagnosed 4 years ago and have been on Tasigna the whole time. The CML has been undetectable  for 3 1/2 years the...brain fog has been the worst part.... for me..by far.  I recently went to see a psychiatrist about it and he prescribed an attention deficit disorder drug called VyVanse.  It has helped ALOT.  I would highly recommend it.  I am 50 years old , work full time and a single mom of 2 teenaged boys.  My life has been chaos due to brain fog the last few years.  I am grateful to have found something that helps.

 

Kerri

 

I have been on Tasigna for a week now and your comment here about being CML undetectable has given me a light at the tunnel. Thansk

[Billie Murawski]

Melissa, I was on gleevac for 3 years and I became undetectable I switched to sprycel and I'm still undetectable 5 years later. There is a light at the end of the tunnel, take care.                                                 Billie

[MarCap73]

Good morning all.  I have a question that hopefully some of you who have posted in this subject area can provide a bit more on.  I have been on Sprycel (100mg) since mid-November and I do find myself starting to have what you are all referring to as 'brain fog'.  I see some of you mentioning it happened well into your treatment, but is two and a half months too soon?  Is it all coincidental - the stresses of this new diagnosis added to an already stressful life?   

[klf2013]

Good morning all.  I have a question that hopefully some of you who have posted in this subject area can provide a bit more on.  I have been on Sprycel (100mg) since mid-November and I do find myself starting to have what you are all referring to as 'brain fog'.  I see some of you mentioning it happened well into your treatment, but is two and a half months too soon?  Is it all coincidental - the stresses of this new diagnosis added to an already stressful life?   

Hi there!

I did notice the brain fog around 3 months into treatment. I am in year 2 now and while it is still present, it doesn't seem as bad. But at first, I felt like someone opened my head and dumped out all my "smarts". I still have to ask my kids to repeat things because they just don't stay in my head, but word finding is better.

[MarCap73]

KLF.  Thank you for the reply.  You describe it well; like someone opening your head and dumping out your smarts.  That's very much how I am feeling.  

[Sassenach]

For the brain fog, what has really helped me is Wellbutrin and taking my TKI before bed.  I'm on Gleevec 400mg/day, and can sleep off a lot of the side effects, then take Wellbutrin in the morning and have enough focus and drive to get through the day.  I tried the minimum dose of VyVanse, ended up in the emergency room getting checked for a heart attack after a stressful day, so I'm grateful to have found another option for fighting the fog that works for me.  Hope that helps as another suggestion!

[tiredblood]

This brain fog is something else. It has come and gone several times over the past couple of years, but here lately, I think the fog has settled in. (Insert sound of fog horn). I've been helping my elderly parents a lot lately and I know they've had to of noticed my blank stare as I've tried to remember what it is that I blanked out on.

 

I was reading the past posts on this thread and see I'm not alone.  Probably a year ago, another time the brain fog was in, I changed lanes on the interstate turning on my windshield wipers instead of the turn signal, and then on the very same day, I tried to use my key fob to open the elevator at the parking deck. Makes me think should I just go ahead and check in somewhere

[VickiW]

Mine got really bad a couple years ago and I had a ball cap made up that said, "I have chemo brain what's your excuse?"  So many people tried to talk me out my hat that I had a dozen more made up and donated them to local clinic to sell as a fund raiser for Relay for Life.