Update

[Guest guest]

I just received the results of my Dec. QT-PCR test. It shows that my BCR-ABL

counts continue to slowly rise. We are now trying to decide at what point I

will resume Gleevec. My ONC is treating other CML patients with various other

protocols. He is seeing good results with all and thinks that since I am on the

first protocol that we should have all the known side effects on the table to

work with. If my worst problems reappear then we will move to something else.

I have risen from .0001 to .0028 since Jan. 2009. He has set a maximum of .01

but is seriously considering lowering it. We will redo the QT-PCR in Apr and

re-evaluate at that time.

H.

dxd 2/03

400mg Gleevec 3/03

CCR 11/03

Zavies zero club #530

Transfusions Dec. 06-May 07

Gleevec Vacation 6/07-1/08

Gleevec 1/08-6/08

Transfusions 6/08-11/08

Gleevec Vacation 6/08-Present

[Guest guest]

Skip,

Thanks for the update..Great to hear you are feeling well even if the

infusions and platelets don't want to cooperate..You are such an inspiration..

SharonS

>

> Good Morning all...

> well its been approx 5 months without any CML treatment, I must admit it feels

good, I seem to feel so much better

> when I am without any treatment.  I am still transfusion dependent, I receive

HGB at least once week and platelets

> at least once week sometime twice a week.  I just talked with Zavie and he

laughs pretty hard when I told him I was

> down to Zero again this past week.  Needed platelets Mon and Thurs to get me

up a bit.  All Zero platelets mean

> is that they could not get any up into the tube to count.  I still navigate

pretty well even with low blood counts.  I

> think if I have close to normal count I would explode.  As I have had all of

the new drugs for CML, I am not sure

> what the next step is going to be.  As I said I feel pretty good, not sure why

my CML seems to react different to

> the standard type, As one doctor said its in my genes, so I went out and

bought  new pants which I am now trying LOL

>

> SkipD dxed 33 years ago.... 

>

[Guest guest]

Hi

Well as far as I know they just wanted me on Nilotinib trial,  I am not sure

other than that.

I was a good candidate for the company, so I had nilotinib for about a year.

When the trial ran out they switched me to dasatinib, now that was something....

Wish I had a better answer but I feel they just wanted me on the trial.

SkipD dxed 1977

________________________________

From: phantom_89108 <phantom_89108@...>

Sent: Mon, April 26, 2010 8:11:08 PM

Subject: [ ] Re: update

 

Hello,

Slip, can you tell me why you stopped Gleevec please?

>

> Good Morning all...

> well its been approx 5 months without any CML treatment, I must admit it feels

good, I seem to feel so much better

> when I am without any treatment.  I am still transfusion dependent, I receive

HGB at least once week and platelets

> at least once week sometime twice a week.  I just talked with Zavie and he

laughs pretty hard when I told him I was

> down to Zero again this past week.  Needed platelets Mon and Thurs to get me

up a bit.  All Zero platelets mean

> is that they could not get any up into the tube to count.  I still navigate

pretty well even with low blood counts.  I

> think if I have close to normal count I would explode.  As I have had all of

the new drugs for CML, I am not sure

> what the next step is going to be.  As I said I feel pretty good, not sure

why my CML seems to react different to

> the standard type, As one doctor said its in my genes, so I went out and

bought  new pants which I am now trying LOL

>

> SkipD dxed 33 years ago.... 

>