Re: Need Some Feedback and Advice/Sharon

[Guest guest]

Dear Sharon,

Thank you so much for your response. Yes, that is the thing that

weighs on me, always having to worry about test results. I know that

is the nature of the beast with CML,but, Sheesh! I will definitely

voice some of my concerns to my doctor.

NYC

>

> Hi ,

>

> I agree with Zavie and Tracey but I want to say-all that testing???

When do

> you ever get your mind off your desease???? I like having to wait

every

> three months for the PCR and my doctor will only do one sooner if

he has

> changed my medication. Like this last time he upped me to 600 mg of

tasigna

> so a month later they want to see how I am doing. Should get

results next

> week. And my CBC's are done ever three weeks to a month. I have

not had a

> BMB since October 2007. Prior to that I was having them every three

months.

> The last 7 were 0% in Fish and the other (you see I can't even

remember the

> name of the other test and I like it that way.) But your results in

the PCR

> are better then my last result was 0.032 ---I think you are doing

well!!!! I

> just think having so many tests makes you dwell on your CML and you

need to

> forget about it for awhile and live. Don't let it consume your

life.

>

>

>

> I would talk to your doctors.

>

>

>

> Good Luck

>

> Sharon T

>

>

>

> _____

>

> From: [mailto: ] On Behalf

Of Matt

> Maynor

> Sent: Saturday, August 16, 2008 8:02 AM

>

> Subject: RE: [ ] Need Some Feedback and Advice

>

>

>

> Great advice Zavie!

>

> With warm regards,

>

> Matt Maynor

> 8132 Hollyridge Road

> ville, FL 32256

> mtmaynoraol (DOT) <mailto:mtmaynor%40aol.com> com

> 904-219-9108

>

> RE: [ ] Need Some Feedback and Advice

>

> Hi ,

>

> There are differences among the top CML specialists on how often to

test. If

> you are unhappy with Dr. Shuster's testing regime then I would

discuss it

> with him. Explain your concerns and desires to him. If he agrees to

say a

> PCR every 3 months and a BMB once a year then you have it made. If

you can't

> work it out with him then you need to find another CML specialist

that suits

> your needs. It is important to always have access to a top CML

specialist.

> Your local doctor doesn't fall into that class.

>

> I'm happy with my current schedule. WBCs every month (I need them

more often

> because I have to monitor my INR), PCRs every 3 months and a BMB

every 18-24

> months. I just switched the BMB from once every 12 months to once

every 2

> years. This was after a discussion with my local CML specialist. I

still

> have an ongoing relationship with Dr. Druker and he is my ace in

the hole if

> anything changes with my CML.

>

> Always remember that PCR results can fluctuate by a half a log (up

or down)

> and that you need 3 consecutive PCRs to detect a trend.

>

> Zavie

>

> Zavie (age 70)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> 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

> 3.6 log reduction Apr/08

> e-mail: zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca

>

> [The entire original message is not included]=

>

>