Re: Diagnosis without a Bone Marrow Biopsy

[Guest guest]

Some doctor,s especially hematologist,can reed blood pretty good,as long as your

counts are good.I would not trust a oncologist. 4 years 600 Gleevec

________________________________

From: Zema <marylzema@...>

Sent: Thursday, June 11, 2009 10:54:04 PM

Subject: [ ] Diagnosis without a Bone Marrow Biopsy

Hi All,

It seems that, after reviewing post upon post, some people are not diagnosed

until a BMB is done. My husband did not have one even though his primary care

doctor said it would be done.

When we saw the hematologist we were braced for the painful procedure. The

doctor said, " based on the blood test, you have CML. " After not hearing the word

" acute " pass his lips I felt like I could faint from relief. He patiently

explained why he could be sure, point by point, and that a BMB wouldn't be

necessary. To be honest my head was swirling and I was not prepared to ask any

intelligent questions, it was all happening so fast.

Now I'm a teensy bit concerned about it. Does anyone have any insight or

experience to share?

Thankful for help,

[Guest guest]

It is very poor medicine not to do a BMB to Dx CML. Check the NCCN Guidelines

and go to a well-trained specialist in CML.

From: Shipley <paulorkay@...>

Subject: Re: [ ] Diagnosis without a Bone Marrow Biopsy

Date: Thursday, June 11, 2009, 11:59 PM

Some doctor,s especially hematologist, can reed blood pretty good,as long as

your counts are good.I would not trust a oncologist. 4 years 600 Gleevec

____________ _________ _________ __

From: Zema <marylzema@sbcglobal .net>

groups (DOT) com

Sent: Thursday, June 11, 2009 10:54:04 PM

Subject: [ ] Diagnosis without a Bone Marrow Biopsy

Hi All,

It seems that, after reviewing post upon post, some people are not diagnosed

until a BMB is done. My husband did not have one even though his primary care

doctor said it would be done.

When we saw the hematologist we were braced for the painful procedure. The

doctor said, " based on the blood test, you have CML. " After not hearing the word

" acute " pass his lips I felt like I could faint from relief. He patiently

explained why he could be sure, point by point, and that a BMB wouldn't be

necessary. To be honest my head was swirling and I was not prepared to ask any

intelligent questions, it was all happening so fast.

Now I'm a teensy bit concerned about it. Does anyone have any insight or

experience to share?

Thankful for help,

[Guest guest]

PS- Also a BMB does not have to be painful! " Twilight Sleep " is a standard at

many Medical Centers.

From: Shipley <paulorkay@...>

Subject: Re: [ ] Diagnosis without a Bone Marrow Biopsy

Date: Thursday, June 11, 2009, 11:59 PM

Some doctor,s especially hematologist, can reed blood pretty good,as long as

your counts are good.I would not trust a oncologist. 4 years 600 Gleevec

____________ _________ _________ __

From: Zema <marylzema@sbcglobal .net>

groups (DOT) com

Sent: Thursday, June 11, 2009 10:54:04 PM

Subject: [ ] Diagnosis without a Bone Marrow Biopsy

Hi All,

It seems that, after reviewing post upon post, some people are not diagnosed

until a BMB is done. My husband did not have one even though his primary care

doctor said it would be done.

When we saw the hematologist we were braced for the painful procedure. The

doctor said, " based on the blood test, you have CML. " After not hearing the word

" acute " pass his lips I felt like I could faint from relief. He patiently

explained why he could be sure, point by point, and that a BMB wouldn't be

necessary. To be honest my head was swirling and I was not prepared to ask any

intelligent questions, it was all happening so fast.

Now I'm a teensy bit concerned about it. Does anyone have any insight or

experience to share?

Thankful for help,

[Guest guest]

Hi ,

I was diagnosed without a BMB, and went almost a year of treatment without one.

My personal opinion is that if someone has " garden variety " CML (if there is

such a thing, but I think you know

what I am driving at), and Gleevac is working, you are probably fine without a

BMB. However, going into this journey,

we have no idea what the future will hold and how our disease will progress.

Today, I would give anything to have a baseline BMB

in my back pocket to see where I was at when I was diagnosed...If you can, I

think it would be great if you can get a BMB, just to

have on hand for the future...Just my 2 cents..

Beth

[ ] Diagnosis without a Bone Marrow Biopsy

Hi All,

It seems that, after reviewing post upon post, some people are not diagnosed

until a BMB is done. My husband did not have one even though his primary care

doctor said it would be done.

When we saw the hematologist we were braced for the painful procedure. The

doctor said, " based on the blood test, you have CML. " After not hearing the word

" acute " pass his lips I felt like I could faint from relief. He patiently

explained why he could be sure, point by point, and that a BMB wouldn't be

necessary. To be honest my head was swirling and I was not prepared to ask any

intelligent questions, it was all happening so fast.

Now I'm a teensy bit concerned about it. Does anyone have any insight or

experience to share?

Thankful for help,

[Guest guest]

> Hi: I have just been reading all these posts, and I would not trust a doctor

who did not do a BMB as soon as he thought I might have CML. That was the first

thing my Oncologist did. I was fortunate that being I worked for him and got my

routine blood work back with a elevated WBC, I went right into his office with

my concern. He sat me down, and said first thing is a BMB. Then we will go

from there after I get a diagnosis. I was in shock that he immediately wanted a

BMB, but he was 100% correct.

I know there are people who are being diagnosed with CML without a BMB, and

their doctors are telling them that they can get all the information they want

from just a PCR. That would not satisfy me.

I am glad that a correct diagnosis was found, and your on the road to proper

treatment.

>

>

> Hi ,

>

>

>

> I was diagnosed without a BMB, and went almost a year of treatment without

one.

>

>

>

> My personal opinion is that if someone has " garden variety " CML (if there is

such a thing, but I think you know

>

> what I am driving at), and Gleevac is working, you are probably fine without a

BMB. However, going into this journey,

>

> we have no idea what the future will hold and how our disease will progress.

Today, I would give anything to have a baseline BMB

>

> in my back pocket to see where I was at when I was diagnosed...If you can, I

think it would be great if you can get a BMB, just to

>

> have on hand for the future...Just my 2 cents..

>

>

>

> Beth

> [ ] Diagnosis without a Bone Marrow Biopsy

>

>

>

>

>

>

>

>

> Hi All,

>

> It seems that, after reviewing post upon post, some people are not diagnosed

until a BMB is done. My husband did not have one even though his primary care

doctor said it would be done.

>

> When we saw the hematologist we were braced for the painful procedure. The

doctor said, " based on the blood test, you have CML. " After not hearing the word

" acute " pass his lips I felt like I could faint from relief. He patiently

explained why he could be sure, point by point, and that a BMB wouldn't be

necessary. To be honest my head was swirling and I was not prepared to ask any

intelligent questions, it was all happening so fast.

>

> Now I'm a teensy bit concerned about it. Does anyone have any insight or

experience to share?

>

> Thankful for help,

>

>

>

>

>

>

[Guest guest]

I totally agree. That was the First thing my Dr. did also. And they kept

doing them every month and over and over again till I got to 0% Fish and the

other (it has been so long I can't remember)

Then they did PCR testing. I think I had a total of 11 BMB. Yuck!!! I hated

them. I used to take 2 valium and 2 attivan but I did lose one day out of my

life because I slept all day after the BMB.

I did not care!!! The worst was when my Dr. was out and he had another Dr.

do it. This Dr. had me lay on my side. I thought I was going to die!!!. My

Dr. was so gentle and good at it.

Yes you should have a BMB!!!!!

Sharon T

_____

From: [mailto: ] On Behalf Of

suzzienovember

Sent: Friday, June 12, 2009 11:27 AM

Subject: Re: [ ] Diagnosis without a Bone Marrow Biopsy

> Hi: I have just been reading all these posts, and I would not trust a

doctor who did not do a BMB as soon as he thought I might have CML. That was

the first thing my Oncologist did. I was fortunate that being I worked for

him and got my routine blood work back with a elevated WBC, I went right

into his office with my concern. He sat me down, and said first thing is a

BMB. Then we will go from there after I get a diagnosis. I was in shock that

he immediately wanted a BMB, but he was 100% correct.

I know there are people who are being diagnosed with CML without a BMB, and

their doctors are telling them that they can get all the information they

want from just a PCR. That would not satisfy me.

I am glad that a correct diagnosis was found, and your on the road to proper

treatment.

>

>

> Hi ,

>

>

>

> I was diagnosed without a BMB, and went almost a year of treatment without

one.

>

>

>

> My personal opinion is that if someone has " garden variety " CML (if there

is such a thing, but I think you know

>

> what I am driving at), and Gleevac is working, you are probably fine

without a BMB. However, going into this journey,

>

> we have no idea what the future will hold and how our disease will

progress. Today, I would give anything to have a baseline BMB

>

> in my back pocket to see where I was at when I was diagnosed...If you can,

I think it would be great if you can get a BMB, just to

>

> have on hand for the future...Just my 2 cents..

>

>

>

> Beth

> [ ] Diagnosis without a Bone Marrow Biopsy

>

>

>

>

>

>

>

>

> Hi All,

>

> It seems that, after reviewing post upon post, some people are not

diagnosed until a BMB is done. My husband did not have one even though his

primary care doctor said it would be done.

>

> When we saw the hematologist we were braced for the painful procedure. The

doctor said, " based on the blood test, you have CML. " After not hearing the

word " acute " pass his lips I felt like I could faint from relief. He

patiently explained why he could be sure, point by point, and that a BMB

wouldn't be necessary. To be honest my head was swirling and I was not

prepared to ask any intelligent questions, it was all happening so fast.

>

> Now I'm a teensy bit concerned about it. Does anyone have any insight or

experience to share?

>

> Thankful for help,

>

>

>

>

>

>

[Guest guest]

Hi, I was told that most drs who do a bmb on the side studied in Europe, don't

know if it's true or not.  But, doesn't common sense tell you it has to be

easier to do if the patient is lying flat, and easier to apply the necessary

pressure? I've had both, and never liked one done on the side, I always felt

like I was going to be pushed off the bed and onto the floor!  (in fact, I seem

to recall someone writing that that had happened to her!!) But didn't I hear a

rumor last year that a bmb will be a thing of the past, as they will be doing

new blood tests?  Now that would make cml almost beautiful.....Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

From: Sharon Teichera <onthewtr@...>

Subject: RE: [ ] Diagnosis without a Bone Marrow Biopsy

Date: Friday, June 12, 2009, 2:35 PM

I totally agree. That was the First thing my Dr. did also. And they kept

doing them every month and over and over again till I got to 0% Fish and the

other (it has been so long I can't remember)

Then they did PCR testing. I think I had a total of 11 BMB. Yuck!!! I hated

them. I used to take 2 valium and 2 attivan but I did lose one day out of my

life because I slept all day after the BMB.

I did not care!!! The worst was when my Dr. was out and he had another Dr.

do it. This Dr. had me lay on my side. I thought I was going to die!!!. My

Dr. was so gentle and good at it.

Yes you should have a BMB!!!!!

Sharon T

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

suzzienovember

Sent: Friday, June 12, 2009 11:27 AM

groups (DOT) com

Subject: Re: [ ] Diagnosis without a Bone Marrow Biopsy

> Hi: I have just been reading all these posts, and I would not trust a

doctor who did not do a BMB as soon as he thought I might have CML. That was

the first thing my Oncologist did. I was fortunate that being I worked for

him and got my routine blood work back with a elevated WBC, I went right

into his office with my concern. He sat me down, and said first thing is a

BMB. Then we will go from there after I get a diagnosis. I was in shock that

he immediately wanted a BMB, but he was 100% correct.

I know there are people who are being diagnosed with CML without a BMB, and

their doctors are telling them that they can get all the information they

want from just a PCR. That would not satisfy me.

I am glad that a correct diagnosis was found, and your on the road to proper

treatment.

>

>

> Hi ,

>

>

>

> I was diagnosed without a BMB, and went almost a year of treatment without

one.

>

>

>

> My personal opinion is that if someone has " garden variety " CML (if there

is such a thing, but I think you know

>

> what I am driving at), and Gleevac is working, you are probably fine

without a BMB. However, going into this journey,

>

> we have no idea what the future will hold and how our disease will

progress. Today, I would give anything to have a baseline BMB

>

> in my back pocket to see where I was at when I was diagnosed... If you can,

I think it would be great if you can get a BMB, just to

>

> have on hand for the future...Just my 2 cents..

>

>

>

> Beth

> [ ] Diagnosis without a Bone Marrow Biopsy

>

>

>

>

>

>

>

>

> Hi All,

>

> It seems that, after reviewing post upon post, some people are not

diagnosed until a BMB is done. My husband did not have one even though his

primary care doctor said it would be done.

>

> When we saw the hematologist we were braced for the painful procedure. The

doctor said, " based on the blood test, you have CML. " After not hearing the

word " acute " pass his lips I felt like I could faint from relief. He

patiently explained why he could be sure, point by point, and that a BMB

wouldn't be necessary. To be honest my head was swirling and I was not

prepared to ask any intelligent questions, it was all happening so fast.

>

> Now I'm a teensy bit concerned about it. Does anyone have any insight or

experience to share?

>

> Thankful for help,

>

>

>

>

>

>

[Guest guest]

lol, it truly would be a beautiful thing! When I had my bmb, the nurse said that

when the docs did them, they only used lidocaine and the patients were

complaining. When the nurse practitioners took over the procedure, they started

giving more pain meds, and the patients were happy! lol

[ ] Diagnosis without a Bone Marrow Biopsy

>

>

>

>

>

>

>

>

> Hi All,

>

> It seems that, after reviewing post upon post, some people are not

diagnosed until a BMB is done. My husband did not have one even though his

primary care doctor said it would be done.

>

> When we saw the hematologist we were braced for the painful procedure. The

doctor said, " based on the blood test, you have CML. " After not hearing the

word " acute " pass his lips I felt like I could faint from relief. He

patiently explained why he could be sure, point by point, and that a BMB

wouldn't be necessary. To be honest my head was swirling and I was not

prepared to ask any intelligent questions, it was all happening so fast.

>

> Now I'm a teensy bit concerned about it. Does anyone have any insight or

experience to share?

>

> Thankful for help,

>

>

>

>

>

>