Re: Need Some Feedback and Advice/Barb

[Guest guest]

Dear Barb,

As always, it is a pleasure to hear from you! I have to admit, I

love both of my doctors and I often refer to them as the CML " Dream

Team. " However, I think it is important to always address all of my

nagging concerns so they don't take up too much of my worrying time.

LOL I think I did the right thing by running some of my concerns

past you guys because you are a great sounding board when it comes to

CML journeys and decisions. I think I now know too much about CML,

if that is even possible. It causes me question a lot of what the

doctors do which I know is a good thing. There can be too much

second guessing, however, because I know that I have good doctors

and, to a certain extent, I should let them do their job. I guess

this is all part of acceptance of the condition and the trials and

tribulations of managing a chronic disease in one's life. I hope

that I will feel more secure and that things will better fall into

place as I learn to live with this for many years.

Love,

> > >

> > > 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

> > >

> >

>