RE: BMB and Memory

[Guest guest]

She sure does! (Rock, that is).

From: jholcomb41@...

Date: Sun, 6 Jan 2008 17:10:44 +0000

Subject: [ ] BMB and Memory

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

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