The reason why I was asking about the religiousness of taking Gleevec

[Guest guest]

I had to have a colonoscopy on June 7th. I have Carolyn and Dr.

Druker VERY stumped. Remember that I am the one with all the weird

side affects from this miracle drug...among these side affects left

me Transfusion Dependent. WELL, I am not telling any of you to STOP

the Gleevec at all.

Here is what happened. On June 7th my hemoglobin was dropping. I

was at 10.1....my platelets also were at 87...and bounced to 103 the

day of the colonoscopy. Because the platelets were so low, my

oncologist gave the order that I could have the colonoscopy but no

biopsies. The two doctors without talking to me decided that I had

an 85% chance that nothing would be found. This is my third

colonoscopy and I had nothing on the other two. Guess what, being a

rare bird that I am, the proctologist looked at me and said " DO NOT

SHOOT THE MESSENGER " -I thought he was joking until he showed me the

pictures-I begged and pleaded to just take out what I was looking at-

TWO, not one, TWO polyps! No can do---I really wanted the gun!

However, I had to be off the Gleevec on prep day Monday and on

Tuesday because I was not allowed to eat and then on Tuesday because

you could only have soft foods. That Thursday, I went in to get my

CBC before getting the Procrit shot. Something VERY odd

happened...my hemoglobin was 11.7, my platelets were 141 and my ANC

waws creeping up from 1.3 to a whooping 1.5. Carolyn called me all

excited until I mentioned the " Gleevec holiday " and also had to tell

her that my next colonoscopy would be on July 12th. Of course, I was

a nervous wreck and began having horrible nightmares! My heartbeat

was rapid and this whole ordeal was eating away at my insides!

The second colonoscopy occurred faster than expected because my

platelets were at 143 a week ago Thursday, Hemoglobin dropped to

10.8, and the ANC was at 1.4. My oncologist figured that if my

Protologist could take me earlier, this would be a very good time.

So this past Tuesday, I went in AGAIN without taking the Gleevec

again on Monday and Tuesday. Since I did not want the same thing

happening that happened the first time (don't we all love that " prep " )

I was MORE cautious and had a CBC done Monday morning before my Prep

began. I was going to be in charge THIS time! My hemoglobin dropped

to 10.1, my platelets to 135 and my ANC was kind of holding (Can't

remember exactly what it was). Low and behold, today (Thursday) I

had my weekly CBC again....hemoglobin rose to 10.8, platelets to 153,

anc to 1.8.........this is really crazy. Like I said, I have the two

experts really confused and baffled once AGAIN!

We talked about serum levels but nothing panned out about this.

Maybe now it will. OBVIOUSLY, Gleevec has become a little toxic even

at 400 mg. I was on 600 mg from April 2003 to August 2004. I

finally put a stop to the naseau and the VERY swollen eyes and the

very swollen legs---against Dr. Druker's expertise (since he woudl

not grant me permission) I emailed them one day and said THIS IS my

body, not yours and I am now on 400mg. They were not too happy about

this BUT I know my body better than everyone else. I believe that

the 400 is also too strong for me.

So, this is why I asked my question and look forward to any imput! I

will be out of town for the next 5-6 days. I will have access to

email, though. I will check in occassionaly...might be better to

email me direct!

I hope I was clear in this letter...if not, I will clear up whatever

I did not by your letters.

One final note: My husband had me write on the fax to Carolyn: " " Do

I just need to have a colonoscopy every month or may I take mini

Gleevec holidays? " Bob (my husband) is TOO cute!!!

Hugs,

Rosenthal

Miami, Florida

seeing Druker on October 13, 2005 next (anyone going to be out

there?) otherwise, we will be going home the next day----no BMB/BMA

this time!)

" undetectable " since October 2004 and March 2005 with trace in the

new " nested " test!

dx January 8, 2003