Need Some Feedback and Advice

[Guest guest]

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