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CML Testing Explained -- Updated


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#1 Trey

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Posted 12 July 2009 - 09:16 PM

PLEASE USE THE UPDATED VERSION OF THIS DISCUSSION AT THIS LINK:

http://community.lls...w-updated-2014/


Edited by Trey, 16 November 2014 - 09:57 AM.


#2 texdeb2

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Posted 13 July 2009 - 10:37 AM

Thank you for taking the time to give us all that information! I go for my 1 year BMB next week.  Can't believe it has been a year already. Everthing has been going fine so far except for the Kidney cancer popping up but got that under control now.  All I can say is it has been one hell of a year as far as medical goes!



#3 mountaindreamer1

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Posted 23 December 2009 - 09:15 PM

I just found this older post of yours...thank you for all the information....

explains so much....

merry christmas,

dawn



#4 elvee

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Posted 22 January 2010 - 11:44 AM

Hi,

It has been quite a while since I posted on this website. I posted about 6 months back when I was diagnosed with CML.

I am on Gleevec 400 Mg from then on. I progressed quite well to get complete Hematology response after about 4 months. My doc increased my dose to 600  mg at that point which I guess is quite normal from the posts I see here.

Last month I went for my usual doc visit he took my blood out for regular CBC counts test but he also performed Fish tests on my blood.

After the results came he said he is not much satisfied with the progress.  My FISH test came back with the following result.  He also suggested that he may also run a test for any resistance I may be developing to Gleevec. This freaked me out a little bit as I thought my CML was fairly in control with Gleevec.

I started this treatment only in July 09.   Here is the summary of my FISH test results. Since I read in this post that FISH test is not most effective below 5% I just want to post this and get some opinions and also suggest me some options / questions for my onc.

Here is the summary of results.  How do I read this?

PCR done on October 15th :   Positive. Major breakpoint 0.27%. Result is consistent with CML.  When they tested at the time of diagnosis it was about close to 10 (9.x) something. On October 15th it was about 0.1.

FISH DONE ON 7th Jan 10 : Out of 500 cells that they counted FISH tests gave 2.4% had +ve Nuclei (I guess PH+ chromosome abnormality).

Any help is appreciated.



#5 Trey

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Posted 22 January 2010 - 12:38 PM

Given the info you provided, you seem to be doing well for 6 months post diagnosis.  I don't understand the Onc's concern.  I would ask the Onc what specifically causes the concern -- is it just the 6 month FISH (or the 3 month PCR)?  If so, the mutation test seems like a waste of time, but it will do no harm (unless you are paying for it).  But it might cause you to question the expertise of your Onc.

Just for additional info, the 500 cell FISH is a little better than the ones that look at 200 cells or fewer.  The false positives for the 500 cell FISH is about 2%, which is right about where your FISH result is.  So your FISH could actually be zero, given the accuracy issue.



#6 elvee

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Posted 22 January 2010 - 03:05 PM

Thanks Trey.  My spinning head stopped with that lucid  explanation.

Two things confused me. To compare apples to apples I would have liked my Onc to perform a PCR test this time around instead of FISH.

That will give me a good idea how the medicine worked after the dosage was increased.  I will ask him to perform another PCR this time so that we can meaningfully compare the results.  Since my two baselines are different (PCR vs. FISH) I have difficulties how to interpret the result.

Thanks once again.



#7 amurray

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Posted 22 January 2010 - 05:52 PM

Trey,

I have not had a bmb since i was originally diagnosed. That was may 09. Should i ask for another bmb? With the issues i havae been experiencing i was going to ask only if my wbc continued to rise but if the standard is having 1 at 6 months it would probably be a good idea to suggest one anyway. What do you think? God bless. amanda



#8 Trey

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Posted 22 January 2010 - 10:35 PM

Yes, I would think a BMB is a good idea.  Especially given the e1a2 breakpoint.



#9 denise52

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Posted 13 April 2010 - 07:05 AM

to trey, this may be out of your comfort zone, so to speak although you seem to be up on the pcr testing, my daughter doesnt have cml, she has apl

she has been on a clinical trial over here in the uk, chemo free using arsenic and atra, she got into complete remission on day 60 of induction, is still in remission but her last

pcr test came back with minimul residue desease !! now i know this can be a sign of that relapse may occur, they found a cell in one hundred thousand, they dont do the test

at her hospital it is sent to london over 300miles away to be checked, her docs said it could be a blip, we are waiting for the results which should be back next tuesday, but i seen

some where you can have a positive negative result, i just wondered if you have any idea of this ? if her test comes back positive then they will change her treatment, if it comes back negative

then it will be up to her if she wants to change treatment, just because it may again go back to positive, and instead of waiting for that to happen may be a good idea to start chemotherapy

we spoke to the clinical trials doc, but she seems to baffle us with science and we come out fearing the worse, any help would be appretiated.



#10 Trey

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Posted 13 April 2010 - 10:47 AM

There can be "false positives" on a PCR.  It seems that her PCR was negative at the 60 day point, then the next PCR showed one leukemic cell out of 100,000.  Most labs would report this as "disease detected but below level of quantification" or something like that.  That is, the PCR should not be relied on as being accurate, although it might be.  There is probably something like a 50-50 chance it is accurate.  The next PCR should sort this out.

Also, a negative PCR does not mean she is cured or free of the leukemia.  It just means the leukemia is below the level of detection by the PCR test.  So whether this last PCR is negative or not, either way the leukemia was almost certainly still present at very low levels at the 60 day point and also at the latest PCR.  There is no way to test to determine if someone is completely cured of leukemia.  The decision to proceed with chemo to try to wipe out the residual leukemia will probably not be an easy decision to make if she is feelling well.

The following report shows very good results for the treatment your daughter is receiving:

"The combination of ATRA and ATO (with or without GO) as initial therapy  for APL was effective and safe and can substitute  chemotherapy-containing regimens."

http://jco.ascopubs.org/cgi/content/abstract/27/4/504

Hope that helps you in some small way.  We hope your daughter will do well.



#11 denise52

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Posted 13 April 2010 - 05:01 PM

thank you trey, for explaining that in a way i can understand, as i said her clinical trial doc just baffles us!!! if i need any more information i know were to come thankyou once again.



#12 helenet

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Posted 15 April 2010 - 11:38 AM

Thank you Trey,

i have been confused (since the onset of my CML in 2006) and did not realize that the FISH test and PCR test were two different tests. Now I am wondering if my ONC has every given me a PCR test (as I think not).  I will make sure I discuss this with him  ASAP. I always thought I was in complete remission-- but this information is only based on the FISH test! WOW-- I am calling right now to make an early appointment!



#13 Dad'sAdvocate

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Posted 16 April 2010 - 02:02 PM

Thank you Trey for sharing all of your information.  I am just learning about CML and already your posting and blogs have explained more than the Dr's, I have a feeling I'll be spending a lot of time on this site.

My question (for now) is:  How long does it normally take for all of these tests to confirm diagnosis to come back?  My father is hospitalized now and the lack of answers is driving us crazy!

He had blood work from primary Dr come back with high WBC and back pain, they suspected CML (I'm assuming because they saw the immature blood cells?)  and sent him in for CAT scans, long story short....before he could make it to the Oncologist appt. 4 days later, he suffered paralysis and had emergency surgery to remove a tumor on his spine.  The bone marrow biopsy has came back the the tumor was leukemia related and not as suspected another form of cancer, as apparently it is rare for CML to form tumors.

The bone marrow did not show signs of AML but the Onc says that does not rule it out.  They started him out on 400 mg of Gleevac right after surgery, even though the diagnosis was not confirmed.  Now one week later, the pathology report is not back yet, The Onc was unable to go infront of the tumor board to discuss this rare tumor and treatment today the Onc upped his Gleevac to 600mg.   He had not seen a Dr. for 3 years and had no symptoms, fatigue, night sweats, weight loss that bothered him.  My concern is that it is AML or in an accelerated or blast phase and that if he needs chemo or radiation we're wasting precious time!   Does pathology usually take this long?  We'd feel so much better if we finally had an answer and could move forward with Leukemia treatment or know if he's going to rehab to work on getting his legs back.

Thank you!!!

Kelly



#14 Trey

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Posted 19 April 2010 - 07:36 PM

For diagnosis the results should be ordered STAT and should be available within 24 hours.  You say that he had a bone marrow biopsy, so why would they say he apparently does not have AML, but they do not know if he has CML, based on the BMB if the report is not available?  That report especially should be available within 24 hours.  There is no reason to wait for days, let alone over a week.

AML, ALL and CML can rarely have extramedullary solid tumors (aka Chloroma or Granulocytic Sarcoma).  To be frank, it is not a good sign.  Often this is at least Accelerated Phase, but can often be Blast Phase.  It is more likely to occur in AML.

http://en.wikipedia.org/wiki/Myeloid_sarcoma

http://www.jcytol.org/article.asp?issn=0970-9371;year=2009;volume=26;issue=2;spage=88;epage=90;aulast=Dhingra

We hope your father does well.



#15 Dad'sAdvocate

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Posted 19 April 2010 - 11:54 PM

No, they've been saying CML since day 1 two weeks ago. The Oncologist only said (as of yet)  that the bone marrow biopsy did not show signs of AML (in the bone marrow itself I assume?)  but to confirm and plan for the next treatment he needed to compare the BMB molecularly with the pathology report, which still 12 days, 8 business day is not back.  ???  I've been researching a lot, perhaps too much and realize that it is most likely not CML as Granulocytic sarcoma is very rare.  It's just frusturating to know that we may be wasting treatment time, so much so that we got  a patient advocate for him at the hospital because this delay, as complicated as testing might be just seems to me unacceptable.  Hopefully we will have answers tomorrow.  It's just crazy to go from apparent good health just 2 weeks ago to this......Thank you for your well wishes.  I wish all of you good health as well.

Thank you!

Kelly



#16 Trey

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Posted 20 April 2010 - 09:39 AM

Ask the Onc the following:

1) Why do you believe this is CML?  Has the Philadelphia Chromosome been confirmed?

2) If Philadelphia Chromosome has been confirmed, how was it detected? (BMB normally used, sometimes FISH).

3) If the Philadelphia Chromosome is not confirmed, then why are they saying it is CML?

4) Why do you say this is not AML but cannot confirm suspicions of CML (depends on answers to above questions)?

5) What test results are they waiting for?

6) What did the biopsy of the spinal tumor reveal?



#17 denise52

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Posted 29 April 2010 - 04:47 PM

hi, my daughter got her pcr results one wk later then expected it came back negative, so far she has had 2 negatives and 1 positive, the positive one was after she had been of treatment for 4wks, both the negative ones have been after she has just completed treatment!!.

now they want another bmb in 2 wks before her treatment starts again to see if there is a trend, at the moment it looks like when not on treatment this cell is appearing, because she is on a trial they take bmb every 8 wks, but we read some where that pcr should be taken at the end of induction then again at the end of consolidation, if its taken inbetween it can muddle things a bit, just wondered if you agree, or what your thought about this are.

would be grateful for any info



#18 Trey

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Posted 29 April 2010 - 07:28 PM

The PCR can be done as often as the clinical trial requires and it will not do anything to change the course of her APL leukemia.  But the PCR is more likely to show as positive when she is off the drugs.  After induction therapy she had a PCR, and if she has another PCR during mid-therapy (before consolidation therapy is completed) it is more likely to show as positive than after consolidation therapy.  You say that could muddle the results, but they are what they are.  Not knowing does not improve the treatment, it just means you do not know if things are going well or not.  I would always want to have regular PCRs at any time, since they tell you the current status.  If somehow the drugs stopped working, you would want to know that right away.

But you should assume that her disease levels are just hovering around the barely undetectable levels, and can show up as detectable sometimes even while on the drugs.  When someone is close to the undetectable limit of the PCR test, the PCR can sometimes find the needle in the haystack (positive), and sometimes it can miss it (negative).  Unfortunately there is not a more sensitive test to tell a person how far below detectability the person is when the PCR is negative.  Maybe just a little, or maybe far below.  From the results, it sounds like your daughter is normally just below the detectability limit, so in mid-couse of treatment she could show as positive by PCR when off the drugs.  Maybe at the end of consolidation therapy her PCR will be more "deeply undetectable" and hopefully stay undetectable.  But she seems to be doing well, and that should be what you focus on.



#19 denise52

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Posted 30 April 2010 - 06:00 AM

thankyou trey for your information, and yes she is doing realy well, i do get very anxious about things which is understandable, i dont know much about leukemia, her sister was diagnosed with hodgkins lymphoma 25days after her, but i do know a little about that, thankyou again from a worried mum  



#20 scuba

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Posted 15 May 2010 - 12:29 PM

Trey - Thank you for your tremendous effort and work to put this all together.  I was diagnosed with CML last Tuesday and just started Gleevec yesterday.

My symptoms were not that bad - I was an energetic guy who started to feel fatigued with an increasing heart rate. My wife forced me to go to the doctor - I just thought I was just getting old (I'm 52).  Turned out I have CML - but apparently it's very early.

I'm drinking Green Tea more now than I used to based on my reading that said that green tea can help Apoptosis along on CML cells.  I wonder if it is possible - even remotely for some of us to actually get not only remission - but a cytogenetic response where CML is gone while using Gleevec.

Again thanks for the terrific information.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"





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