Re: Help with Lab info needed Please

[Guest guest]

Hi Sharon,

Without going into detail, let me say that you were diagnosed very early

with your CML. Most newly diagnosed patients are 100 % CML positive. Your

FISH test shows that you are only 33% CML positive.

My experience with patients diagnosed this early is that they respond

extremely well to Gleevec.

Looking forward to assigning you a Zero Club number very soon.

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

3.5 log reduction Jan/08

3.6 log reduction Apr/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

serenitywon

Sent: June 2, 2008 8:43 PM

Subject: [ ] Help with Lab info needed Please

Hello everyone,

I thought I would post my labs results to see if anyone here

could help me figure them out..

BCR/ABL1 Gene Rearrangement(Philadelphia Chromosome)(Fish)

Specimen Blood

Molecular Probe

LSI BCR/ABL Dual color,Dual Fusion Translocation Probe (VYsis)

Result

nuc ish 9q34(ABLx3),22q11.2(BCRx3),(ABL1 con BCRx2)

(66/200)

Interpretation

The BCR/ABL1 gene rearrangement was detected in 66 of 200 nuclei

examined

ph positive cells have been reported in approximately 90-95% of

CML,20% of adult ALL,2% of adult AML and 5% of childhood ALL patients.

Could anyone please explain any of this to me?

Thanks

SharonS

[Guest guest]

Hi Sharon,

These results are from a FISH test and your results are remarkably

low for someone who was just diagnosed. You have just 33% of your

cells with the Philadelphia chromosome whereas the vast majority of

us had 100% on diagnosis.

Did they do a BMB (bone marrow biopsy)? Most doctors do them on

diagnosis. BMB's are important to give you additional information

about the state of your marrow and to see if you have any other

chromosomal abnormalities that need to be monitored more closely.

CML itself can be diagnosed with just a FISH test but your prognosis

will depend on the findings of the BMB.

Hope that helps,

Tracey

>

> Hello everyone,

> I thought I would post my labs results to see if anyone here

> could help me figure them out..

>

> BCR/ABL1 Gene Rearrangement(Philadelphia Chromosome)(Fish)

> Specimen Blood

>

>

> Molecular Probe

> LSI BCR/ABL Dual color,Dual Fusion Translocation Probe (VYsis)

>

> Result

>

> nuc ish 9q34(ABLx3),22q11.2(BCRx3),(ABL1 con BCRx2)

> (66/200)

>

> Interpretation

>

> The BCR/ABL1 gene rearrangement was detected in 66 of 200 nuclei

> examined

>

> ph positive cells have been reported in approximately 90-95% of

> CML,20% of adult ALL,2% of adult AML and 5% of childhood ALL

patients.

>

> Could anyone please explain any of this to me?

> Thanks

> SharonS

>

[Guest guest]

Zavie,

Well that's encouraging news..I test massive vials(13-17) of

blood every 3 months due to my WLS.I track them on an excell program

and watch for trends.I am at high risk for vitamin/mineral

deficiencies.I take my supplementation very seriously.I have been

seeing the high white and Platlet count for almost 18 months-2 years

now.I had extremely high Cortisol levels for a period and was being

tested for Cushing Syndrom.I had lots of chemical tests etc.My levels

finally started to come down some.Makes it hard to lose weight with

levels like mine.I just new something wasn't right with me..I was

exhausted all the time and they kept telling me my Iron was fine.You

just don't feel this wiped out on such a regular basis when you

supplement and eat as healthy as I do..I try to be proactive with my

Dr.s and health.I am really trying to understand all this.There is

alot to learn.I'll keep on researching.

Thanks

SharonS

In , " Zavie miller " <zmiller@...> wrote:

>

> Hi Sharon,

>

> Without going into detail, let me say that you were diagnosed very

early

> with your CML. Most newly diagnosed patients are 100 % CML

positive. Your

> FISH test shows that you are only 33% CML positive.

>

> My experience with patients diagnosed this early is that they

respond

> extremely well to Gleevec.

>

> Looking forward to assigning you a Zero Club number very soon.

>

> 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

> 3.5 log reduction Jan/08

> 3.6 log reduction Apr/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

> From: [mailto: ] On Behalf

Of

> serenitywon

> Sent: June 2, 2008 8:43 PM

>

> Subject: [ ] Help with Lab info needed Please

>

> Hello everyone,

> I thought I would post my labs results to see if anyone here

> could help me figure them out..

>

> BCR/ABL1 Gene Rearrangement(Philadelphia Chromosome)(Fish)

> Specimen Blood

>

> Molecular Probe

> LSI BCR/ABL Dual color,Dual Fusion Translocation Probe (VYsis)

>

> Result

>

> nuc ish 9q34(ABLx3),22q11.2(BCRx3),(ABL1 con BCRx2)

> (66/200)

>

> Interpretation

>

> The BCR/ABL1 gene rearrangement was detected in 66 of 200 nuclei

> examined

>

> ph positive cells have been reported in approximately 90-95% of

> CML,20% of adult ALL,2% of adult AML and 5% of childhood ALL

patients.

>

> Could anyone please explain any of this to me?

> Thanks

> SharonS

>

>

>

>

[Guest guest]

Tracey,

That's really great news..My Dr hasn't done a BMB and as far as I

can tell doesn't plan to at least he hasn't mentioned it.I will ask

about it.He seems confident that the Gleevec will bring the numbers

down and he told me not to worry.After coming to this group and

researching and learning some I am getting a list of questions

together for him.Does anyone have any suggestions on questions for me

to ask my DR?I really appreciate all the help I have been given.

Thanks

SharonS

In , " Tracey " <traceyincanada@...> wrote:

>

> Hi Sharon,

>

> These results are from a FISH test and your results are remarkably

> low for someone who was just diagnosed. You have just 33% of your

> cells with the Philadelphia chromosome whereas the vast majority of

> us had 100% on diagnosis.

>

> Did they do a BMB (bone marrow biopsy)? Most doctors do them on

> diagnosis. BMB's are important to give you additional information

> about the state of your marrow and to see if you have any other

> chromosomal abnormalities that need to be monitored more closely.

>

> CML itself can be diagnosed with just a FISH test but your

prognosis

> will depend on the findings of the BMB.

>

> Hope that helps,

> Tracey

>

>

[Guest guest]

Hi Sharon,

I don't doubt that you'll do well with Gleevec but I think you really

do need a BMB on diagnosis.

In the old days people got them pretty much every 3 months for the

rest of their lives (because so few people reached CCR) but now with

Gleevec being so successful, people don't get them nearly as often.

Once a person has reached CCR (complete cytogenetic response), they

can often go years without having one again (assuming they don't have

other things going on that need to be monitored) but you really need

to have one on diagnosis (to make sure you don't have any other

things going on to start with). You also need to have another one

between 3-6 months later to confirm your CCR. There isn't an expert

around that I know of, who would forgo a BMB on diagnosis, there's

just too much information you can get from it that you can't get from

the other tests.

If your doctor isn't well experienced with CML I would suggest you

look into getting one who is. You have enough going on with you that

you really need someone who knows what they're doing and can juggle

all your concomitant illnesses.

Take care,

Tracey

> >

> > Hi Sharon,

> >

> > These results are from a FISH test and your results are

remarkably

> > low for someone who was just diagnosed. You have just 33% of

your

> > cells with the Philadelphia chromosome whereas the vast majority

of

> > us had 100% on diagnosis.

> >

> > Did they do a BMB (bone marrow biopsy)? Most doctors do them on

> > diagnosis. BMB's are important to give you additional

information

> > about the state of your marrow and to see if you have any other

> > chromosomal abnormalities that need to be monitored more closely.

> >

> > CML itself can be diagnosed with just a FISH test but your

> prognosis

> > will depend on the findings of the BMB.

> >

> > Hope that helps,

> > Tracey

> >

> >

>

[Guest guest]

Tracey,

I will be looking into this info.Lottie has suggested it as well.I

will let you all know what I find out..

Thanks for the info as I really have no idea what I should be doing

or asking for.This group is great..

SharonS

In , " Tracey " <traceyincanada@...> wrote:

>

> Hi Sharon,

>

> I don't doubt that you'll do well with Gleevec but I think you

really

> do need a BMB on diagnosis.

>

> In the old days people got them pretty much every 3 months for the

> rest of their lives (because so few people reached CCR) but now

with

> Gleevec being so successful, people don't get them nearly as

often.

>

> Once a person has reached CCR (complete cytogenetic response), they

> can often go years without having one again (assuming they don't

have

> other things going on that need to be monitored) but you really

need

> to have one on diagnosis (to make sure you don't have any other

> things going on to start with). You also need to have another one

> between 3-6 months later to confirm your CCR. There isn't an

expert

> around that I know of, who would forgo a BMB on diagnosis, there's

> just too much information you can get from it that you can't get

from

> the other tests.

>

> If your doctor isn't well experienced with CML I would suggest you

> look into getting one who is. You have enough going on with you

that

> you really need someone who knows what they're doing and can juggle

> all your concomitant illnesses.

>

> Take care,

> Tracey

>

>

> > >

> > > Hi Sharon,

> > >

> > > These results are from a FISH test and your results are

> remarkably

> > > low for someone who was just diagnosed. You have just 33% of

> your

> > > cells with the Philadelphia chromosome whereas the vast

majority

> of

> > > us had 100% on diagnosis.

> > >

> > > Did they do a BMB (bone marrow biopsy)? Most doctors do them

on

> > > diagnosis. BMB's are important to give you additional

> information

> > > about the state of your marrow and to see if you have any other

> > > chromosomal abnormalities that need to be monitored more

closely.

> > >

> > > CML itself can be diagnosed with just a FISH test but your

> > prognosis

> > > will depend on the findings of the BMB.

> > >

> > > Hope that helps,

> > > Tracey

> > >

> > >

> >

>