Re: Appointment With New Oncologist

[Guest guest]

I have this question too. I'm still headed to zero, but I have changed docs 3

times during this and each one has their own ideas about which tests to use and

when, if ever, to BMB. Is there some kind of a standard guideline?

>

> Hi: Most of you do not know what a worrier I am,but I got to the doctors

office, and the nurse came out to talk to me. She said Dr. Dasani is so anxious

to meet you, and was glad you had appointment today. He looked over all my

blood work, and this was my first visit with him. My PCR was still the same

0.000, and I was told I was PCRU. I see a kidney doctor also, and all my numbers

are normal.

> WBC 4.0, and my usual Low RBC etc. I have not had to have a BMB all these

years since I achieved a Cytogenetic Remission.

> He told me when I am due for my next PCR, he wants to do a BMB instead

along with a FISH. He said CML CELLS can hide in the marrow.

> If I had a mutation of some type, I thought it would show in my counts etc.

He got me all upset that he was looking for something after giving me good news.

> I guess I need Trey or Zavie on this one. Way back in some posts, I did

see someone mentioned that a periodic BMB should be done no matter what your

status is. I was told to do a regular blood work in 3 months, and then the BMB

in July before my appointment.

> Anyone, who can put my mind at ease would be greatly appreciated.

> Thank You

>

> #293 in Zavie's Club

>

[Guest guest]

Hi:  I think that is a problem also.  This doctor did not know me at all.  My

Oncologist who retired was also my boss for 12 years.  I was my Oncologist's

secretary, and he found my CML early, and started treating me right away.  It

is not just my Oncologist, its all the different doctors I see.  They all ask

me the same questions, and no idea that another doctor has run the test on me

that they are telling me to go get. I am constantly updating all the doctors as

to my status.

    My husband saw I was so upset, and he just told me to relax and just take

one day at a time.  I would like to talk to someone who has to do a BMB after

all this time.

We will get the answers we need.  Thanks for your response.

From: mindyfacey <mindy@...>

Subject: [ ] Re: Appointment With New Oncologist

Date: Tuesday, January 19, 2010, 9:13 PM

 

I have this question too. I'm still headed to zero, but I have changed docs 3

times during this and each one has their own ideas about which tests to use and

when, if ever, to BMB. Is there some kind of a standard guideline?

>

> Hi: Most of you do not know what a worrier I am,but I got to the doctors

office, and the nurse came out to talk to me. She said Dr. Dasani is so anxious

to meet you, and was glad you had appointment today. He looked over all my blood

work, and this was my first visit with him. My PCR was still the same 0.000, and

I was told I was PCRU. I see a kidney doctor also, and all my numbers are

normal.

> WBC 4.0, and my usual Low RBC etc. I have not had to have a BMB all these

years since I achieved a Cytogenetic Remission.

> He told me when I am due for my next PCR, he wants to do a BMB instead along

with a FISH. He said CML CELLS can hide in the marrow.

> If I had a mutation of some type, I thought it would show in my counts etc. He

got me all upset that he was looking for something after giving me good news.

> I guess I need Trey or Zavie on this one. Way back in some posts, I did see

someone mentioned that a periodic BMB should be done no matter what your status

is. I was told to do a regular blood work in 3 months, and then the BMB in July

before my appointment.

> Anyone, who can put my mind at ease would be greatly appreciated.

> Thank You

>

> #293 in Zavie's Club

>

[Guest guest]

Zavie had posted (been several months ago) Dr. Druker's thoughts on what test

when.. Thought I had saved it but do not seem to be able to find it. Maybe

someone can mention it to him during the skype chat tonight

Anita

________________________________

From: mindyfacey <mindy@...>

Sent: Tue, January 19, 2010 8:13:20 PM

Subject: [ ] Re: Appointment With New Oncologist

I have this question too. I'm still headed to zero, but I have changed docs 3

times during this and each one has their own ideas about which tests to use and

when, if ever, to BMB. Is there some kind of a standard guideline?

>

> Hi: Most of you do not know what a worrier I am,but I got to the doctors

office, and the nurse came out to talk to me. She said Dr. Dasani is so anxious

to meet you, and was glad you had appointment today. He looked over all my

blood work, and this was my first visit with him. My PCR was still the same

0.000, and I was told I was PCRU. I see a kidney doctor also, and all my numbers

are normal.

> WBC 4.0, and my usual Low RBC etc. I have not had to have a BMB all these

years since I achieved a Cytogenetic Remission.

> He told me when I am due for my next PCR, he wants to do a BMB instead

along with a FISH. He said CML CELLS can hide in the marrow.

> If I had a mutation of some type, I thought it would show in my counts etc.

He got me all upset that he was looking for something after giving me good news.

> I guess I need Trey or Zavie on this one. Way back in some posts, I did

see someone mentioned that a periodic BMB should be done no matter what your

status is. I was told to do a regular blood work in 3 months, and then the BMB

in July before my appointment.

> Anyone, who can put my mind at ease would be greatly appreciated.

> Thank You

>

> #293 in Zavie's Club

>

[Guest guest]

My PCR was still the same 0.000, and I was told I was PCRU. I see a kidney

doctor also, and all my numbers are normal.

> WBC 4.0, and my usual Low RBC etc. I have not had to have a BMB all these

years since I achieved a Cytogenetic Remission.

> He told me when I am due for my next PCR, he wants to do a BMB instead

along with a FISH. He said CML CELLS can hide in the marrow.

> If I had a mutation of some type, I thought it would show in my counts etc.

He got me all upset that he was looking for something after giving me good news.

______________________

Hi ,

This does NOT sound like a cml specialist to me. No one is doing FISH any more,

not when you have a string of PCR tests to compare. FISH is not a sensitive test

and someone who is pcru or close...FISH is not going to show anything.

When someone has been stable for a long time...steady white count, low pcr,

etc.......you are probably not going to find anything in a BMB. When they do a

BMB in this type of situation, they are looking at the cellularity of the marrow

(are you hypocellular, which would show up in the blood counts) or do you have

any other chromosome abnormalities (not likely in a stable case). You test for

mutations with a blood sample.

To me this sounds like an inexperienced cml doctor who is going to cover all his

bases by doing every test....even when you most likely don't need them. I would

ask for a second opinion about this....or try if available to get a different

doctor who has more experience.

ps I think I have had cml about as long as you??? 11 years, and I am only a bit

better than CCR......but Dr. Druker stopped doing BMBs on me quite a while

ago......he said, I have done 20 (because of drug trials) and I know what your

marrow looks like. He also says that when your cml is stable for years, it is

not very likely to change....and you can best monitor for this with pcr testing

and cbcs.

C.