Re: Re: SSDI & cognitive impairment-

April 17, 2007

Honestly Tracey, I think they figure we're living so we should just be happy

about that. They don't care. I definately have had that impression from a few

doctors, nurses, disability people, etc. It's like...what are you complaining

about...so what if you're in the bathroom constantly or your food tastes like

tin...you're living what are you complaining for? Don't get me wrong...I'm very

very very happy to be alive and able to watch my son grow and become a young man

but that doesn't mean that I'm happy with my quality of life.

:}

[ ] Re: SSDI & cognitive impairment-

Hi ,

I've often thought that it could be Gleevec's effects on our

electrolytes that contributed to the cognitive side effects but what

frustrates me is that there doesn't seem to be any interest to pursue

this from the researchers. I haven't found even one article that

talks about any kind of cognitive side effects, yet we all know that

they exist.

Likewise, no one seems to be interested to study the effects that

Gleevec has on our hormones except for a few studies linking it to

gynecomastia in men. From all the complaints we've seen from women

complaining about missed periods, heavy periods, irregular periods,

and in my case, an abnormally high Prolactin level, it's obvious to

me that Gleevec has some effect on hormones but why don't any of the

researchers seem to care about this? Is it not reasonable to think

that such an effect on hormones could potentially put us at risk for

gynecological cancers or other problems? I just don't understand why

this isn't being looked at.

Take care,

Tracey

>

> > there are numerous articles out there showing that Gleevec can't

pass the

> > blood brain barrier so it's hard to argue cognitive effects of a

drug that

> > doesn't even reach the brain but we know from all the list

members who

> > complain of the exact same side effects that this impairment is

indeed real,

> > even if we can't find any articles to support it.

>

> Hi Kathy and Tracey,

>

> When I first started IM I was relieved to hear that it didn't cross

the

> blood brain barrier (BBB), assuming it would therefore have no

central

> nervous system effects. Since I'm definitely sleepier and somewhat

fuzzier-

> headed when I'm on the drug compared to when I'm off it, I've

though a lot

> (when I felt able to do so!) about that reasoning, and have

concluded that

> it's bogus: drugs that don't cross into the brain can still

interfere with

> its functioning by altering the metabolism of other substances that

do cross

> the BBB. For example magnesium (Mg++) , an electrolyte which

readily crosses

> the BBB and which effects energy and alertness, is found to be low

in many

> patients - though, granted, it is excessive Mg++, rather than too

little,

> which is associated with lassitude. I'm unaware of IM-induced

changes in

> other commonly measured blood chemistries, but there are many

chemicals in

> the blood that we don't routinely monitor; even minor changes in

some of

> these could effect brain functioning over time.

>

> Cheers,

>

> R

>

May 2, 2007

Hi Tracey,

I think that there is a simple answer to your question. It just isn't

interesting enough or serious enough to warrant any investigation.

I have been bitching, moaning and complaining about my memory for a number

of years. They never took me seriously. Finally I decided to get myself

tested. I went through a battery of IQ and memory testing. Well, once they

found that my IQ was off the Richter scale, they no longer had any interest

is pursuing my memory complaints.

It's the same with your Gleevec side effects. Once they find out how well

you are doing with your CML, they no longer have any interest in pursuing

Gleevec's affect on gynecological problems.

Zavie (age 68)

67 Shoreham Avenue

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem