Re: Memory and Disability --

[Guest guest]

Dear ,

is right that you need to speak with SS. In addition, make

sure you speak first with any private insurance company that is

paying a disability claim. You don't want to do anything to

jeopardize that either.

As for the side effects, I have suffered from memory loss and

impaired focus and concentration for quite a while and I follow this

issue closely whenever there are discussions on these boards. I

don't know if you're aware, but, blood-brain barrier or not,

Novartis does acknowledge in its Rx insert that memory loss is a

side effect of Gleevec -- they say it's rare, but they do

acknowledge it happens.

I was interested in what Jacki had to say about SKI. I have now

encountered folks on Gleevec, Sprycel, Tasigna and SKI who have some

sort of cognitive impairment.

Warm regards.

>

> Hi all,

>

> I haven't posted on this site in a long time, but I do keep up

with

> everyone through the posts. I started on Gleevec through a MDA

> trial in June of 2002. It took a long time before I hit CR, but I

> maintained it for a while, although my WBC count stayed " out of

> range " at 15 to 18. Then earlier this year my BM showed that the

> leukemia cells were back at 70%. Due to lung concerns they did

not

> feel Sprycel was an option for me and my insurance coverage and

out

> of pocket expense ruled out other drugs, so I started a new trial

at

> MDA for SKI. The first few weeks were TOUGH as I always have

> strange undocumented side effects, but things seem to be getting

> better. My last BMB in Oct showed that SKI had reduced the cells

> from 70% to 20%. I think my response was slower than others in

the

> trial but at least there was a response.

>

> As far as BMB and sedation, my very first (and second) BMB was

done

> by my local Onc. who told me he was " good " and I had nothing to

> worry about... Because of the time of my appt the option of

sedation

> was not an option, so I decided to just bite the bullet...

> literally!!! My brain was still reeling from the diagnosis and all

> the things that go through our minds at this time. I chose to lay

> on my side for the procedure and while almost tearing a pillow in

> half I survived, although I knew I would be scared for life due to

> the experience and sounds. Everyone in the room reassured me that

> the worse was over but they were wrong... the bone that was

drilled

> into was DRY... not a drop of marrow to be found... so they

scooted

> over an inch or so and started all over again!!!!!! I really like

> my local onc but I do tease him about how WRONG he was about

> being " good at BMB " ...

>

> After that all of my BMB have been done at MDA. I still just bite

> the bullet and go without sedation; however I do feel that the

techs

> have a lot to do with the overall experience. There are 3 or 4

> techs at MDA that are WONDERFUL and I breathe a sigh of relief

when

> I walk in and see that I was lucky enough to have them do the BMB.

I

> have had a couple of bad experiences, but nothing like my first,

but

> the majority of them have been great... surprisingly enough I had

NO

> PAIN AT ALL. I'm not sure what they did differently but I was

> AMAZED.

>

> On thing I have learned is that if I have pain during the

procedure

> I tend to not be as sore later... unfortunately if I do not have

> much pain I am very sore afterwards... as usual I always

> have " weird " reactions to everything.

>

> Finally, I am SO RELIEVED to hear of the memory issues others are

> having. I did not notice (or at least I don't remember) memory

> issues on gleevec, but on SKI I feel like I have lost my BRAIN!!!

> I have had a lot of the same experiences many of you posted about

> and I did get concerned enough to contact both of my research

> nurses, one from the gleevec study and one from the ski study.

Both

> told me that it was " middle age and more than likely stress

> related " . I'm 43 years old (even though my body feels like it is

> 100) and I've always had a great memory, but now... I'm doing good

> to remember my name. In fact I answered the phone at work and

> said " this is ------ " I went TOTALLY BLANK, I actually FORGOT my

> name! Not to mention totally forgetting simple every day words in

> the middle of a sentence. Just to name a few instances. It is

very

> scary!!!!!!!!

>

> I do want to thank all of you for sharing your experiences and

> advice. Especially Tracey. She ROCKS!!!!!!

>

> I wish all of you the best...

>

> Jacki

>

> Austin Tx

> dx'd June 2002

> Gleevec 6-02 to 5-07

> SKI 5-07

>