Re: R & the rest of the group

[Guest guest]

Hi ,

I have the same dilemma. It appears to be a total crapshoot when it comes to

PCR testing. I know that Dr. Hochhaus' lab in Mannheim does the most

sensitive and most consistent PCR testing. There is an international effort

underway to standardize PCR testing, but progress is slow.

From my own personal experience ... A PCR test done at the Royal

Hospital in Montreal was PCRU while a PCR test done in Mannheim was 0.55.

How far apart can you get.

Novartis Canada is now doing free PCR testing for all patients who request

it. There are 7 labs (independent) across Canada doing the testing and they

are standardized according to Novartis' guidelines. I was 0.021 on November

25, 2004 and just had a blood draw last week. It will be interesting to see

the results.

My local haematologist thinks it is safe to go a year (even longer) without

a BMB as long as you are at Zero.

Zavie

is number 111 in the Zero Club

<snip>

My question is how the heck do we know which darn lab has accurate results?

And is it really safe to go a whole year without a BMB? I dunno???

As soon as I get my BMBA results I will post it all here so we can all try

to figure out what's going on.

Thanks

ez

Tampa Fl

[Guest guest]

> From my own personal experience ... A PCR test done at the Royal

> Hospital in Montreal was PCRU while a PCR test done in Mannheim was

0.55.

> How far apart can you get.

>

Hello From the Cancer conference - which is going exceptionally well!

We talked about PCR's this morning. Good point here Zavie, I would

only add that the trouble with getting tested in differnt labs is

that we are usually getting tested at different intervals. To make a

true comparison, you would have to use the same specimen, technique

and probably even technician as all factors will have a consideral

impact on the results.

I can hardly wait for the seven centres to be standardized, but I

think we still have a long way to go.

The best thing we be what is suggesting - pick one lab and

stick with it. There really isn't much of a benefit in comparing

results against other labs that haven't been standardized. However,

Dr. Hochhaus and Dr. Tim have standardized their labs. Our

friend Janet just had her PCR test done with Dr. in

Australia. Lucky her.

Cheers,

Cheryl

[Guest guest]

Hi , I see you too have decided that this little " possible " change is

not going to get you down.

I also read the post from Cheryl about picking one lab and sticking to it.

The problem is that I don't know which one to stick with right now.

I think my Onc will make that decision for us soon.

I am very fortunate that he is very thorough when to comes to testing, etc.

I had BMB's every 3 months just up until my 3 year anniversary. He then said

ok you're doing great so let's do them every year.

I have been PCRU .000 since August of 2001 after being on Gleevec for only 2

months. And that was always by BMBA.

Just last year the same lab that had always done my tests from BMBA

indicated the .1 then 2 weeks later it was 0 but from PB at the local center

here in Tampa.

(I went back to our major center here thinking it would be a good idea to be

an active patient in the event an upward trend occurred)

I cannot remember which breakpoints the most recent PCR showed an increase

in. I didn't ask for a copy of the test that day because I kind of reacted

quickly with a denial comment - " I am not worried about that " But honestly

as soon as I left his office, I was worried. BUT...only for a few minutes:)

I am going to pose your question about the breakpoints to my ONC and ask

that he compare to the original dx BMB.

He will be very interested in this suggestion since he thinks very highly of

this support group and now suggest that every one of his patients join an

online support group like this.

But, I don't really remember them doing a PCR at initial dx?

Some didn't even get a FISH back then in May 2000.

I had my first FISH done 90 days after dx during BMB and it was from the

advice I received from this group that prompted my ONC to do it.

Remember FISH was the big NEW test back then IN 2000.

Then qualitative PCR & Now Quantitative R-PCR

I will get a copy of all 3 reports once I get the results from my BMA I just

had and post them to the group.

Hopefully this will just lead us to figuring out which lab is the best to

use.

Thanks again,

Hi ,

> Date: Wed, 16 Mar 2005 16:49:23 -0500

> From: " ez " <lmartinez@...>

> Subject: R & the rest of the group

> Saw your post the other day about some changes in your PCR test and hope

you

> are doing well.

Thanks for your concern regarding my PCR. I still don't know whether the

increase from a very low 0.0002 to 0.0018 was real or not, because the

repeat test had a sensitivity of only 0.002, as opposed to their usual

0.0001. I don't know why this is; I was told it's because my RNA might have

degraded, but this doesn't really make much sense to me. In any case, I've

stopped worrying about it because the chances that I'm actually relapsing

arre very low, and I've got much better things to think about. I am,

however, considering switching centers for future PCR's. Boston is much

closer to me than NYC, and MSKCC's lab has been just a bit too disorganized

for my taste. I'd appreciate recommendations from any of you regarding Dana

Farber heme-oncs.

> In February 2004 my BMA indicated that there was a very small amount

detected

> In one of the 3 major break points. .1 very low. But with that my doctor

> insisted I go and get another PB PCR and see if it was the same or if it

> differed. So I went back to my local Cancer center here after almost 4

years

> of not going there and their test was negative. We decided to believe the

> best. I was scheduled for this years BMBA just this Monday and prior to my

> visit my Dr asked me to go get my PCR at a different lab (Labcorp) My

results

> from Labcorp indicate the same major breakpoint from last year going from

..1

> to .5 and now another one of the 3 is .22 It is a small amount I know but

> again we are thinking about the possibility of an upward trend. We are now

> going to compare the PB PCR to the BMA but the results won't be In until

> around the end of next week. To go one step further my doctor has me going

> back to the local center here to use their Lab so we can compare all 3. I

> think he still believes that there is a difference in the PB PCR test and

The

> PCR from the BMA.

>

> My question is how the heck do we know which darn lab has accurate

results?

> And is it really safe to go a whole year without a BMB? I dunno???

> As soon as I get my BMBA results I will post it all here so we can all try

> to figure out what's going on.

I agree, this is all pretty confusing, . It's a common dilemma -

getting second or third opinions, or backup lab tests, then not knowing

which to believe among the differing results. It doesn't help that qPCR's

for BCR-ABL haven't yet been standardized nationwide. This pertains to the

problems I'm facing as well.

A couple of questions about your post. First, I'm unclear on whether the

breakpoint that was noted in your test was the same as the one you were

diagnosed with, or a new one. That is, was the 0.1 a ratio of one breakpoint

to another, or is that the actual qPCR result? I'm a bit rusty on the

subject of breakpoints, but as I recall, a couple of them carry normal

prognostic significance, where others are not so favorable.

Then there's the matter of PB vs BMA. With respect to breakpoints, I don't

think it should matter which one you use because within a short time of

being produced in the marrow, all white cells show up in the blood. It's

only when the Phillies are reproducing rapidly, such as in accelerated or

blast phase disease, that there's likely to be much of a discrepancy. There

are other reasons to have BMA's done from time to time though, and if you

haven't had one for over a year and have still not reached a 3 log reduction

by qPCR, then I'd consider it a good idea.

I look forward to seeing your next test results.

Warmly,

R

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.859 / Virus Database: 585 - Release Date: 2/14/2005

[Guest guest]

My husbands oncologist at UCLA, Dr. Ron Paquette, told him that the blood

tests that UCLA does in-house would be sufficient. Therefore, would

not have to have anymore BMAs. He mentioned that these PCR tests test to

a much higher level than the BMA.

Hope this helps,

husband Georg, dx 7/04

hematologic remission

Gleevec 400 mg

working on PCRU

At 01:15 PM 03/18/2005, ez intelligently penned

snip

>I am going to pose your question about the breakpoints to my ONC and ask

>that he compare to the original dx BMB.

>He will be very interested in this suggestion since he thinks very highly of

>this support group and now suggest that every one of his patients join an

>online support group like this.

>But, I don't really remember them doing a PCR at initial dx?

>Some didn't even get a FISH back then in May 2000.

>I had my first FISH done 90 days after dx during BMB and it was from the

>advice I received from this group that prompted my ONC to do it.

>Remember FISH was the big NEW test back then IN 2000.

>Then qualitative PCR & Now Quantitative R-PCR

>

>I will get a copy of all 3 reports once I get the results from my BMA I just

>had and post them to the group.

>Hopefully this will just lead us to figuring out which lab is the best to

>use.

>

>Thanks again,

>

>

>Hi ,

\

[Guest guest]

He mentioned that these PCR tests test to

> a much higher level than the BMA.

>

>______________________________________

Hi and Everyone,

Unfortunately it's like comparing apples to oranges. The PCR looks

at one thing.....the bcr/abl transcript, and the BMA looks at a

number of things, including the actual chromosomes and the

cellularity of the marrow.

When done properly, the PCR is very sensitive and can see one

transcript in a very large sample of cells. The problem however is

that PCR's are notorious for being unstandardized and few centers

seem to be doing them properly. I would question any lab who has a

rate of more than 5%-10% of their patients showing negative on a PCR.

BMA/BMB's look at the cellularity of the marrow to see if it is

healthy and can also look at the chromosomes to see if there are any

other clonal evolutions aside from the philadelphia chromosome.

I like the attitude that in NY's doctor has in that a PCR is

just another test to compliment the others. I don't think any

clinical decisions should be made on only one test and I don't

believe that PCR's can be a substitute for an occasional BMB.

Take care,

Tracey

[Guest guest]

Tracey,

Thanks for the info. However, since we travel over 350 miles every quarter

to visit UCLA I think we will keep going.

My husband, , likes the Dr and believes he is getting better care

than when we went to Las Vegas only 60 miles away.

And....if they do not want to do a BMA, is rather grateful. His

numbers have been going down every time, so we will keep our fingers crossed.

husband Georg, dx 7/04

hematologic remission

Gleevec 400 mg

working on PCRU

At 05:02 PM 03/20/2005, Tracey intelligently penned

>

> He mentioned that these PCR tests test to

> > a much higher level than the BMA.

> >

> >______________________________________

>

>

>Hi and Everyone,

>

>Unfortunately it's like comparing apples to oranges. The PCR looks

>at one thing.....the bcr/abl transcript, and the BMA looks at a

>number of things, including the actual chromosomes and the

>cellularity of the marrow.

>

>When done properly, the PCR is very sensitive and can see one

>transcript in a very large sample of cells. The problem however is

>that PCR's are notorious for being unstandardized and few centers

>seem to be doing them properly. I would question any lab who has a

>rate of more than 5%-10% of their patients showing negative on a PCR.

>

>BMA/BMB's look at the cellularity of the marrow to see if it is

>healthy and can also look at the chromosomes to see if there are any

>other clonal evolutions aside from the philadelphia chromosome.

>

>I like the attitude that in NY's doctor has in that a PCR is

>just another test to compliment the others. I don't think any

>clinical decisions should be made on only one test and I don't

>believe that PCR's can be a substitute for an occasional BMB.

>

>Take care,

>Tracey

>

>

>

>

>

>

>

>