Re: Need Some Feedback and Advice/Tracey and All

[Guest guest]

Dear Tracey,

I think you are right and I should be safer knowing that he

monitors me so closely. Believe me, I definitely would like to avoid

the BMBs as much as possible as I know from personal experience how

painful they can be. I just want to make sure that I am covering all

the bases as far as disease monitoring and frequency of tests. I did

read that BMBs are recommended every 12 to 18 months for patients in

CCR. I have tested FISH negative by peripheral blood the last two

times. I wonder if Fish negative by peripheral blood constitutes

CCR? Can you only be deemed in CCR by marrow? Just some more

questions I'm sure someone will chime in and answer.

NYC

> >

> > Dear Friends,

> > I hope everyone is doing well. I would like to warn you that

> > this is going to be a long post, however, I ask that you bear

with

> me

> > as you all will ultimately help me to make a big decision

regarding

> > my current physician situation.

> > As most of you know, I was diagnosed in July, 2007 and have

> been

> > on Gleevec ever since with my last PCR at 0.02 in July, 2008. I

> > promptly fired my first hem/onc in October of 2007 when I

realized

> > that I knew more about current CML guidelines than he did. A

> friend

> > of mine, whom I met through the Leukemia Society, referred me to

> her

> > hem/onc who has always been very thorough and has a wonderful

> bedside

> > manner as well as being knowledgeable about CML. We will call

> > him " Dr. C. " Since diagnosis, I have also been seeing a CML

> > Specialist at Cornell Division of NY Presbyterian named Dr.

> > Schuster. He is the director of BMT and Clinical Research and

> > actually directed the Gleevec Clinical trials when they first

came

> to

> > NY.

> > Here is my dilemma...Dr. C. usually sees me every three weeks

> > upon which he performs a CBC as well as a PCR once a month. I

> cannot

> > begin to tell you how stressful it is to have a PCR that often in

> > terms of waiting for results. He does this because he feels that

> it

> > is better to be " on top " of things in order to identify a problem

> > early on. I just made a year since diagnosis in July and I had

> some

> > questions about why I haven't had a second BMB yet and I was

> > initially told by Dr. C that we could put it off a couple of

months

> > because my numbers were so good. I think this is ok because Dr.

> > Schuster has concurred with this but has also told me that I can

> > choose to have my BMB in the hospital if I want to. The thing

that

> > bothers me is that I just found out from the friend that referred

> me

> > that Dr. C has done a BMB on her every six months since

diagnosis.

> > Why the different treatment approaches I wonder?

> > Anyhoo, I just recently discussed this issue with Annie

Baggett

> > and she is absolutely wonderful and told me that I have to choose

a

> > situation that I feel comfortable with. I decided that I am

going

> to

> > tell Dr. C that I feel that I should be having CBCs every six

weeks

> > and PCRs every three months, as per CML guidelines. I am just

> > concerned that if he stonewalls me and refuses to change his

visit

> > and testing schedule, I will have to make a decision to leave

him.

> I

> > am not sure if I am prepared to do that. I do understand,

however,

> > that the Specialist at Cornell is perfectly capable of monitoring

> my

> > disease but, I just liked having the extra checkups. It's almost

> > like a catch 22. There would also be the other benefit of not

> having

> > so many co-payments.

> > You see, I initially saw a local doc and the Specialist

because

> I

> > felt that the local onc didn't know enough about CML. Now my

local

> > onc is really knowledgeable about CML just like the specialist

is,

> he

> > just believes in more frequent monitoring. I have discussed this

> in

> > detail with my husband and he feels that it is really a personal

> > decision and that I would be better suited asking you guys what

you

> > think since you are in the struggle with me. Am I wasting time

and

> > money at this point having two doctors? Am I better off just

> seeing

> > the Specialist at Cornell? Will I be losing that personalized

> > attention if I cut the local hem/onc out of the equation? How

> should

> > I broach altering the testing schedule with my local onc? Should

I

> > question him about the differences in treatment between his other

> CML

> > patient and I? Any and all opinions and feedback would be greatly

> > appreciated.

> >

> > Love,

> >

> > NYC

> >

>

[Guest guest]

>I have tested FISH negative by peripheral blood the last two

> times. I wonder if Fish negative by peripheral blood constitutes

> CCR? Can you only be deemed in CCR by marrow?

**************************************

Hi ,

Yes, a peripheral blood FISH can confirm a CCR. The " fool proof " test

is the cytogenetics but a zero FISH is almost as good. It's certainly

enough to get you into Zavie's Zero Club if you don't already have a

number.

Congratulations,

Tracey