6 replies to this topic

[VickiW]

Hi everyone!  been gone for quite some time and here's ANOTHER new board!  All the great info I had links to are gone from all you knowledgeable folks.  What a shame.

 Anyway, here is my question/inquiry.

 

Does anyone know of any correlation between long term TKI use and the development of  neurological disorders such as Parkinson's, etc?  I mean other than the neuropathy that just about all of us are dealing with in one level or another.  Curious because I am scheduled by my PCP for a brain scan tomorrow looking for a cause of some odd symptoms that don't quite fit into the "neuropathy" mold but none the less appear to be clearly neurological.

 

any input or ideas greatly appreciated!  Thanks in advance.

 

BTW-nice to see so many names I recognize from many years since (technically been a member/survivor and thru many board changes since 2007) and hoping those I was looking for just are doing so well they never bothered to sign back onto this new board.

 

Vicki

[Trey]

TKI drugs are being tested to help slow down Parkinsons Disease and other neurological disorders such as Alzheimer's disease, amyotrophic lateral sclerosis (ALS), Huntington's disease, and Lewy body dementia by inhibiting c-ABL as our TKI drugs do.  Not all TKI drugs can cross over the Blood-Brain Barrier to get to the brain, but Tasigna seems to do it best, followed by Sprycel.  Gleevec does not cross over as easily, but apparently does to some degree.  You may want to show this to your Onc:

http://www.foxnews.c...tia-discovered/

http://uthscsa.edu/h....asp?newID=3665

 

TKI drugs have also been shown to give mice "better cognitive functions".  How much better than "I want cheese and sex" does a mice think?  Inquiring minds....

 

TKI drugs also cause mice to live longer.  Why would we want mice to live longer?  But I guess the thought is maybe CML patients will not only live a normal life, but maybe even longer than normal.  And maybe without Oldtimers Disease and such.  Think about that!!!

 

It's good to "see" you again, Vicki.  "And your little dog, too....."  (music from The Wizard of Oz plays in the background....)

Edited by Trey, 27 August 2014 - 03:35 PM.

[hannibellemo]

I second Trey, Vicki! It's so good to read your posts again. I was going to say I hope all is well with you, but obviously it isn't, so at least I hope it isn't serious (not that that boat hasn't already sailed, too. I mean, we do, all of us, have CML) 

 

So I will just content myself with "welcome back, it's good to have you on the boards again!"

 

Pat

[VickiW]

Hi guys 

Wow. Trey, just as I remember you,  an amazing resource.  You were there with a helping hand when I was first struggling with my journey and here you are again, Bless you!!!!

The links are fantastic and a real eye opener.  So, if I do have Parkinson's (kind of looking that way) I am already on the best drug(s) to keep it slowed down! (ok, where's the thumbs up emoticon?)  Already printed out the articles and plan to drop them off to my PCP when I go for the test tomorrow.  My Onc isn't in on this.....yet.  I have a great one but he's over 2 hours away so I'll probably be snail mailing him a copy too.

 

Hi Pat!  (insert hand waving emoticon)  Thank you for the good wishes and actually, everything considered, things really are very well with me   I mean I am a 7+ yr CML survivor (aka LIVING) walking miracle after all!   I hope the same is true with you!

 

Now, Trey has given me some great directions to go in for more research so looks like my fingers are going to have a very busy evening!

 

ETA;  my dr's office just called.  My insurance would not cover the CT scan (what was ordered) but they will approve an MRI  so I'm rescheduled for Sept. 2nd. Now, my dr calls to explain what was going on and told me she would have liked to just do the MRI anyway, but thought the insurance wouldn't allow it so she opted for what she assumed would be the easier to get thru and then fight for the MRI later if the CTscan was negative.  She couldn't believe that they told her "why don't you just do the MRI and be done with it?"   Got to love UHC.  They have been just super with all my "hiccups".  When I was dxd with paracardial and peripheral effusions I got so many Echoes I was on a first name basis with the technicians and just had to wave at the front desk to check in   but my insurance never balked once. Whew.  

 

Also got the chance to tell my dr at least the high points of the articles and she was shocked and excited!  Made me promise to get her copies.  I might drop them off tomorrow along with whatever else I did up tonight.

[gerry]

That's interesting Trey, the Gleevec fog must be something else happening. I thought I had avoided it until it started happening to me after three years on Gleevec, Forgot appointments and names etc, brain returned to normal (normal for me) when I came off, was the one side effect that cleared up pretty quickly.

[ChrisC]

Hi Vicki — glad that you showed up! And, glad that your situation is getting tended to.

Carry on!

ChrisC

[Trey]

Gerry,

I think the brain fog thingy is something less deep-rooted, such as messing with electrolytes balance or something like that.  Mine disappeared after lowering the dosage, and it seemed to be gone even before that.  But the inhibition of c-ABL helping reduce brain plaque is very interesting.