Frequency of BMA/BMB after CCR

[Guest guest]

Hi Zavie and Everyone,

Yes, it's true that many of the experts still recommend having

BMA/BMB's every " so often " (usually it's every 18 months to 2 years

for someone with a 3 log reduction) but there are also experts such

as Dr. Sawyers who say they're not necessary after CCR, so it's still

a very controversial issue, even among the experts.

The main reason they do them (after CCR) is to see if the patient has

developed any clonal evolutions and to check the cellularity of the

marrow since the CML itself can be tracked using PCR's at that

point.

So you have to ask yourself, what information are you going to get

from a BMB/BMA at this point? Is it going to change your treatment

or is it going to serve to worry you about something that you can't

change.

I feel it's the latter so I choose not to have them at this point.

If I wasn't in CCR, I would have them every 3 months but since I'm

doing well on Gleevec, I don't need to hear that my marrow is

hypocellular (something I can't change) and I don't need to know if I

develop a trisomy or monosomy (that I can't change either). If there

was something I could do to change these findings, then it would be

worth it to know but since there's nothing to do about it, I don't

see any need to know.

Zavie, have you seen any articles that support the need to do BMB's

after CCR? I haven't seen any that explain how useful they can be

other than to give the doctor information which would never be used

in treatment decisions. From the patient perspective, what's the

point of that?

That's just the way I see it.

Tracey

[Guest guest]

Hi Tracey,

I don't have any specific articles, and at this point it is purely up to you

and your doctor.

I come from an era where all we had BMBs and PCR testing was just starting.

I am still waiting for the PCR test to be standardized. It troubles me that

a high powered group has been working on getting it done for several years

and nothing has come out. To me that just means that there is something in

the PCR testing world that is not right. It has taken me quite a while to

settle on one lab, but without a standard, they can change their method of

working or reporting and we are back to square one.

I am still not at PCRU and will have a BMB done every18 months or so. Maybe

I'm Just hanging on to the good old days.

Zavie

Zavie (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.2 log reduction Jun/07

3.6 log reduction Sep/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of Tracey

Sent: January 26, 2008 9:57 AM

Subject: [ ] Frequency of BMA/BMB after CCR

Hi Zavie and Everyone,

Yes, it's true that many of the experts still recommend having

BMA/BMB's every " so often " (usually it's every 18 months to 2 years

for someone with a 3 log reduction) but there are also experts such

as Dr. Sawyers who say they're not necessary after CCR, so it's still

a very controversial issue, even among the experts.

The main reason they do them (after CCR) is to see if the patient has

developed any clonal evolutions and to check the cellularity of the

marrow since the CML itself can be tracked using PCR's at that

point.

So you have to ask yourself, what information are you going to get

from a BMB/BMA at this point? Is it going to change your treatment

or is it going to serve to worry you about something that you can't

change.

I feel it's the latter so I choose not to have them at this point.

If I wasn't in CCR, I would have them every 3 months but since I'm

doing well on Gleevec, I don't need to hear that my marrow is

hypocellular (something I can't change) and I don't need to know if I

develop a trisomy or monosomy (that I can't change either). If there

was something I could do to change these findings, then it would be

worth it to know but since there's nothing to do about it, I don't

see any need to know.

Zavie, have you seen any articles that support the need to do BMB's

after CCR? I haven't seen any that explain how useful they can be

other than to give the doctor information which would never be used

in treatment decisions. From the patient perspective, what's the

point of that?

That's just the way I see it.

Tracey

[Guest guest]

Hi Zavie,

I understand the nostalgia but if you want to use that logic, why

don't you keep using Interferon because that was the way it was done

back in the good ol days

Remember also, the reason everyone had BMB's every 3 months back in

the good ol days wasn't because we didn't have PCR's it was because

almost no one got to CCR.

Even with PCR's today, if a patient isn't CCR, I think regular BMB's

are merited but for people in CCR, I just don't see the need.

Like you said, to each his own,

Tracey

>

> Hi Tracey,

>

> I don't have any specific articles, and at this point it is purely

up to you

> and your doctor.

>

> I come from an era where all we had BMBs and PCR testing was just

starting.

> I am still waiting for the PCR test to be standardized. It troubles

me that

> a high powered group has been working on getting it done for

several years

> and nothing has come out. To me that just means that there is

something in

> the PCR testing world that is not right. It has taken me quite a

while to

> settle on one lab, but without a standard, they can change their

method of

> working or reporting and we are back to square one.

>

> I am still not at PCRU and will have a BMB done every18 months or

so. Maybe

> I'm Just hanging on to the good old days.

>

> Zavie

>

>

> Zavie (age 69)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> 2.9 log reduction Feb/07

> 3.2 log reduction Jun/07

> 3.6 log reduction Sep/07

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

>

> _____

>

> From: [mailto: ] On Behalf

Of Tracey

> Sent: January 26, 2008 9:57 AM

>

> Subject: [ ] Frequency of BMA/BMB after CCR

>

> Hi Zavie and Everyone,

>

> Yes, it's true that many of the experts still recommend having

> BMA/BMB's every " so often " (usually it's every 18 months to 2 years

> for someone with a 3 log reduction) but there are also experts such

> as Dr. Sawyers who say they're not necessary after CCR, so it's

still

> a very controversial issue, even among the experts.

>

> The main reason they do them (after CCR) is to see if the patient

has

> developed any clonal evolutions and to check the cellularity of the

> marrow since the CML itself can be tracked using PCR's at that

> point.

>

> So you have to ask yourself, what information are you going to get

> from a BMB/BMA at this point? Is it going to change your treatment

> or is it going to serve to worry you about something that you can't

> change.

>

> I feel it's the latter so I choose not to have them at this point.

> If I wasn't in CCR, I would have them every 3 months but since I'm

> doing well on Gleevec, I don't need to hear that my marrow is

> hypocellular (something I can't change) and I don't need to know if

I

> develop a trisomy or monosomy (that I can't change either). If

there

> was something I could do to change these findings, then it would be

> worth it to know but since there's nothing to do about it, I don't

> see any need to know.

>

> Zavie, have you seen any articles that support the need to do BMB's

> after CCR? I haven't seen any that explain how useful they can be

> other than to give the doctor information which would never be used

> in treatment decisions. From the patient perspective, what's the

> point of that?

>

> That's just the way I see it.

> Tracey

>

>

>

>

[Guest guest]

I haven't seen any that explain how useful they can be

other than to give the doctor information which would never be used

in treatment decisions. From the patient perspective, what's the

point of that?

_______________________

Hi Tracey,

The point of that is that maybe in some small way (any way) it helps

advance the research of CML and the understanding of treatment and the

disease and if they do need to be concerned about any of the clonal changes

they sometimes see. I think for me, the minor discomfort of a BMB is a

small price to pay personally to help the research along (that is for those

of us who are seeing the CML specialists). Just like those of us who are in

trials or have a research doctor allow (they need your permission) an extra

BMA draw (and that small sucking pain) for research material. If they

understand the disease better, maybe they get everyone to MR or maybe it

helps find a cure. I guess the 'why bother' response is different if you

are just seeing a local oncologist and they are just testing and will dump

the rest of the material.

My 2-cents,

C.

[Guest guest]

Hi ,

Yes I agree totally. If by doing regular BMB's you know that you're

contributing to research in some way, then of course it's worth it and

I would also do it. In my case though, (and probably many of us on the

list), we don't have specialists and nothing special is done with our

samples so that's why I say " why bother " .

Additionally, if I wasn't in CCR and/or there was something I could do

about the results (treatment wise) then I would also do it. If my

PCR's suddenly started to rise, again, I would see the purpose for it

and not hesitate to do it but as long as I stay in CCR and my PCR's

remain stable, I don't think (for me) I want to bother with them.

Tracey