15 replies to this topic

[GerryL]

Hi Trey,

I finally managed to get a copy of my original BMB undertaken in June 2010, just wondering where the information might be that would tell me where I started it, so I can tell how I am progressing. Some of the information is as follows

BCR-ABL by PCR

Specimen:                                   Bone Marrow

BCR-ABL Quantitative                    See Comment

BCR-ABL Qualitative                         Positive

Comments

BCR-ABL transcript detected by qualitative PCR assays.

BCR-ABL transcript detected in quantitative PCR however an accurate baseline BCR-ABL transcript level cannot be determined due to suboptimal control gene amplification in the assay. This may reflect RNA quality /quantity or inhibitors to the quantitative assay being present in the bone marrow sample. Suggest repeat testing on 10-20ml edta peripheral blood to establish baseline bcr-abl %.

Second BMB on 29/11/2010

BCR-ABL by PCR

BCR-ABL not detected in submitted sample Note control gene copy number was borderline indicating suboptimal RNA quality /quantity. Assay sensitivity may be affected Suggest repeat testing.

I've had my blood drawn for the next Fish / PCR but I don't see the specialist till the end of May. Just wondering if you had any thoughts or suggestions of where else I should be looking on my report?

Thanks in advance for your help with this.

Gerry

[Trey]

The BMB report should have a line that starts 46XX, t(9;22).....etc.  What does that say?  The write-up should also explain the results.

Your first PCR from marrow aspirate failed.  Your second PCR from marrow was also likely a failure.  Ask your Onc which control gene their PCR uses, and see if they can change labs to one that uses a different control gene.  Both of your PCRs referenced poor quality in the control gene, as well as other possible issues (sounds like they used the wrong tube to store the first sample -- meaning it had the wrong preservative in it).

There may also have been a reference to "nuc ish" which is FISH (nuclear FISH).  Look for a number written something like XXX/200.  That is the FISH result (number of leukemic cells in a sample of 200 or whatever number was sampled).

[GerryL]

For the test on 13/07/2010

Cells Examined               Interphase

Number of Cells Screen     200

Karotype:                          46,XX,t (9;22) (q34;q11.2) [30]

                                      nuc ish (ASS1x2), (ABL1x3), (BCRx3),

                                       (ABL1 con BCRx2) {154/200}

Interpretation                    FISH studies were POSITIVE for BCR/ABL [t(9;22)}dual fusion in 77% of interphase cells examined, consistent with CML.

                                            All cells examined were Philadelphia chromosome POSITIVE, consistent with CML.

For the test on 29/11/2010

Number of cells analysed           7

Number of cells counted          13

Karyotype                               46,XX[20]

Interpretation                           Female karyotype, no abnormality detected.

This was when he told me I had reached CCyR - but he wasn't available to ask about the BCR-ABL by PCR test as he went on holidays and I couldn't get any of the other Hematologists to call me back.

Thanks again for you help with this.

Gerry

[Trey]

So you went from 100% BMB cytogenetics and 77% positive FISH in July 2010 to a zero BMB cytogenetics in Nov 2010.  That is certainly CCyR.  I would not worry about the rest.

[GerryL]

Hi Trey,

I had been hoping for an MMR as my goal is to hopefully get to PCRU, where I can eventually go down to 300mg Glivec and just take it to mainten PCRU. If I manage to get a copy of the latest PCR blood test prior to my appointment I might run that past you if I can't make sense of it. Unfortunately it is the same lab group as the previous two tests, we don't have that much variety here in Aus. Hopefully I might get something I can use this time as they are using blood and not bone marrow.

Thanks again for your help.

Gerry

[GerryL]

Hi Trey,

I've managed to get a copy of my latest PCR test for 27/04/11 - didn't get a copy of the FISH (didn't see my usual GP and it was like pulling teeth to get the copies I did get).

It states -

BCR-ABL detected but not accurately quantifiable. The level is less than 0.02%

Does this put me at MMR - and if so how would I tell if I ever reach PCRU - would it be the BCR-ABL isn't detected/negative at the Qualitative level?

Thanks again for your help

Gerry

[PhilB]

Just in case Trey is off having fun and takes a while to answer (and no I don't have any idea what Trey does for fun when he's not on here.  Ikebana?  Folk dancing?)

Assuming your lab is on the International scale then yes you are well into MMR.  MMR on IS is 0.1% and you are round about another full log below that.  Congratulations.

If you are one of the lucky ones who make it to PCRu then the test would indeed say 'not detected'

Phil

[Trey]

The few times I have dealt with Australian PCR issues I have not been overly impressed.  The statement "detected but not accurately quantifiable" possibly means that the PCR was at the low end of its detection range, so the leukemia level is apparently very low, but I don't know for certain.  So this would mean that the result is easily MMR.  But you should ask for clarification on the language.  Either way it is a good result and you are doing well.

[PhilB]

He's keeping very quiet on the folk dancing...

[GerryL]

Hi Phil,

Thank you - I'm not sure if the achievement has sunk in yet, I was trying to work out how to move the decimal points and whether that would start from the Fish results or if there were set places for the decimal points to tell where you were. I'll probably be doing my own little happy dance later today.

As to folk dancing for Trey, maybe square dancing? Or just a happy dance if he gets a hole in one whilst playing golf.

Cheers

Gerry

[GerryL]

Hi Trey,

The PCR testing here doesn't appear to be the greatest compared to the results others have published, unfortunately we are limited in our choice of labs and I'm not sure if the other lab follows the same procedures.

At least I get to talk to my specialist face to face in a little over a weeks time, about all the results.

Some of the questions I'll be asking are "Why can't they get a PCR result from a BMB; clarification on what the latest notes mean; if I manage to achieve PCRU how will that be indicated?" I also need to find out if in future, they can send me the results directly rather than having to go through the GP all the time.

I'll also be discussing the potential of eventually lowering the dosage if I manage to get to PCRU. I also found out he didn't order a CMP this time round, which I will now have done through my GP.

I'm just glad I've got you, Phil and others on the board to learn this stuff from.

Thanks

Gerry

[Tedsey]

Dear Gerry,

Don't have much I can add to this, but I am hoping you are a hare and have actually achieved MMR.  Hope you get everything sorted out with the testing.  Best of luck to you!  Sending good vibes your way!

Teds

[GerryL]

Thanks Teds

I'm having a glass of wine to semi celebrate tonight. Be interesting whether my specialist really knows what an MMR looks like , for him CyCR was a big achievement - gonna make his head spin when I start whining about wanting to get to a PCRU and hopefully a reduction in medication eventually.

I've been lucky that I picked up the possibility of having leukemia fairly early and I know I have very little to complain about compared to the issues you and others have had. I keep my fingers crossed that your blood work will return to normal soon and you can quickly follow me to achieve MMR and beyond.

I'm still hopeful that they will come up with a cure sooner rather than later and we can all return to our "normal" lives.

Gerry

[GerryL]

Hi Trey and Phil,

I saw the Hematologist today - he agreed with you both that I had achieved MMR. I told him my next aim was to try and get to PCRU, he said he thinks I have a good chance of achieving it. Downer was when I mentioned about reducing the Gleevec after a couple of years of PCRU - he said no. He said they had been trying this in the States, but people were relapsing. And if my side effects were too bad, he would swap me to a different TKI. Well I still have to get to PCRU, and I can cope with the side effects, here in Australia if you switch drugs due to feeling that the side effects are intolerable, it is very difficult to switch back, so I  guess I stay on 400mg Gleevec. I'd like to keep the other two drugs up my sleeve in case I no longer respond to Gleevec.

I also asked why our tests can't show the lower end scale of PCR - he said the government had made a decision about the cut off point and that is all they would be paying for.

So I'm now on six monthly visits and blood tests.

Gerry

[czkeidel@aol.com]

I read your blog and thank you for all you are doing.  It is so helpful

What does it mean if your PCR one-year results show that your log reduction (decrease in bad cells)  is worse (meaning point on graph went up -  rather than down or remaining the same since previous testing at 6 months??  Doc says maybe a lab error but if not, what are the possible implications??

If gleevec is not working - what would explain why now?? Also would you have other signs that it is not workng or certain side effects that weren't present earlier??

Thank you

Carole

[Trey]

Carole,

You posted more info today at a spot on this L&LS website which is not used -- it is in a "black hole" in the website.  I only saw it because I looked at your history before replying to you.  You should post your questions on this CML Discussion Board.

http://community.lls.org/thread/12235

At the other posting your said:

(1)  At six months after diagnosis, PCR showed a "log decrease from  the median ratio of 2.0" and  said that "log change from my previous  result is 1.6" -- the ratio BCR/ABL1 to ABL1: 0.09196 (which I  understand shows better than expected decrease of bad cells)

I am  confused that when reading online about PCR test results and log  decreases -which figure (median or individual) is the one referred to  when people talk about the log reduction progress

(2)  At one year, my PCR results revealed a "statistically significant"  difference from 6 month findings but in undesired direction (meaning  that the amount of bad cells detected did not go down or stay the same  but went up) - not sure how to phrase that in terms of log reduction but  guess it means there was a log increase??  - it is still in a positive  territory for someone at 12 months,  according to my doctor -- although  he recommended re-doing the PCR to see if the finding reflects a lab  error.  My question is - if the results are accurate -- what could that  mean??  I take gleevec 400 mg and never miss a dose - so could this be a  sign of other mutations involved -- is it common for numbers to  fluctuate?

First, having PCRs done at 6 months is not good practice until the patient has achieved a very good response, probably after MMR (3 log reduction).  Until them the patient needs 3 month PCRs if responding to drug therapy, or more often if not responding.  It seems that your previous PCRs showed decreases, but this one has increased by an unknown amount.  Any single PCR can show a higher number, which is why trends are important.  But there is not enough information here to know what your Onc considers a "statistically significant difference" from the 6 month PCR.  If the increase was over maybe 1/2 log (then error rate for PCRs) then the PCR should be repeated now.  If less than that you could wait a while, but not longer than 3 months.  You should have 3 month PCRs anyway.