15 replies to this topic

[whitemomo]

I am 27 years old male.

two year ago my platelet was 630, one year ago my platelet count was 600, and this year it was 620, so my doctor asked me to had my blood checked for BCR-ABL using R-PCR method (marker 100bp)

the test result came back as "there;s a BCR ABL gene b3a2 at amplicon product 385 bp which result protein p210" and my platelet came back as 500

all the other blood test came back as normal for the last 3 years (white blood etc), the only abnormality is my uric acid is 7.2 mg/dL (which is 0.2 mg/dL above the upper threshold )

1. does this mean I am have CML?

2. I heard that BMB is required in order to conclude whether someone has CML or not, if that's the case why do my doctor asked me to get my blood checked for BCR/ABL instead of doing BMB first?

i wont be meeting any doctor until the next two weeks so I am anxious! And I am not covered in any insurance so all this cost of doing test is pretty daunting.

Thanks !

[pammartin]

Unfortunately I do not have any experience with your results I am new to CML, but there are many people here who will help to figure out your results and offer sound advice.  I can relate to the anxious, I only had to wait a week for my results and I think it was the longest week I have had to work through for a very long time.

Take care

[Trey]

Based on the PCR showing BCR-ABL gene b3a2, you have CML, unless it was a lab mistake.  The BMB should be done to confirm the diagnosis.  The high platelets showing up before other blood indicators is fairly standard for how CML develops.  You may want to read this:

http://community.lls.org/docs/DOC-1271

[whitemomo]

Thanks all for the reply

What worries me is the cost of glivec is beyond me who has unstable income and it's expensive for 3rd world country. Glivec has to be taken for life isn't it?

I do hope it's a lab mistake although I dont get my hope up too much. Will schedule a BMB in January 2012 as I have to fly out of country to get it done.

how soon do this develop to a more dangerous stadium? or does it vary for each person?

[ritan/]

gleevec is taken for life (or another of it's related drugs: sprycel or tasigna currently--more are on the road to FDA approval i believe). it is expensive, however if you don't have insurance novartis may provide it free of charge. that's how i get mine.

in terms of how soon it will develop into a dangerous stage? it does vary to some degree i believe, and it sounds like you've been caught pretty early, perhaps. what is your current white blood cell count? after a BMB there will be better information available. but in general, in the past, when there was no medication as i understand it (that did more than simply treat symtoms--there was medication given, but it did not treat the underlying disease), CML generally had a 3-5 year survivability from time of diagnosis. since you are perhaps being caught in the early chronic phase (if your WBC is not elevated) you might get longer.

i've no idea where you are, but many people diagnosed with CML at early ages seem to have more "aggressive" forms from my understanding. (i'm not sure this is true, nor do i know where i got that impression---maybe it isn't true) at any rate, regardless, you don't want to do without medication if you have any choice at all. CML progresses into blastic phase and upon reaching blastic phase is far less survivable and as i understand it, it is very painful and unpleasant as well.

good luck with your BMB!

[whitemomo]

hi thanks!

I am from a small city in Indonesia!

My leucoyte (WBC) 6,300 white blood cells per microliter (normal range: 3800 - 10600 )

The first time I discovered that my platelet was too high was 2-3 years ago but no one told me that it was dangerous. However 3 weeks ago my platelet was down to 500, close to normal range of 400

I cant get it for free since for novartis only provide it for people with too low income and I heard that drug sometimes is not available

[ritan/]

i'm not sure this is true. i do not have terribly low income, and novartis supplies mine. i do have insurance, but it is considered to be "inadequate" i believe because of a very high deductible. i've never heard that gleevec is unavailable--i've no idea, i haven't been on it very long, so i'm sure someone who knows more than i will come along shortly to address that.

if your WBC is not elevated, i'm not sure how far along it is. since most people seem to get diagnosed by a elevated WBC i'd expect that your is a bit earlier.

[CallMeLucky]

I think you should wait until you have a definitive diagnosis before you worry about how to get the medication for a disease you may or may not have.  How CML develops is still not clearly understood.  At this point you have normal blood counts.  You have BCR/ABL detected, which would strongly indicate you have the Philadelphia Chromosome, which would mean you have CML, but until that is determined for certain, you can't be sure and you certainly can't start any type of treatment plan.  You need a bone marrow biopsy to evaluate your bone marrow and look for evidence of Philadelphia Chromosome.

If it turns out you have it there are a few different options.  You can try to go to Novartis and see if you they will give it to you.  You can also explore getting a generic version of the drug from India.

Wait until you have a diagnosis before you do anything else.

Good luck.

[Trey]

Your condition based on the WBC does not suggest urgent action is needed, so a January BMB would be acceptable.  The drug makers have different programs for various countries, so the information about what happens in the USA may not apply, so you should inquire at the Novartis website.  This is the US only site, but has a non-US button at the top:

http://www.patientas...376892998115239

[whitemomo]

THanks everyone for the helpful insights

I will update you once I get more news from my hematologist!

[PhilB]

I'd also recommend that you check out the Yahoo Group 'AsianCMLSupportGroup'  as a likely place to find others from your own region / country who may be able to point you in the right direction for assistance programmes and / or access to the Indian generic.  I haven't been on for a long while, but it always used to be a great place.

[whitemomo]

update: I got conflicting result for my blood test

After consultation the doctor told me to get a BCR ABL blood test again (RT PCR)

but at Singapore. The result came back as negative where as the result that I

got from different lab in my country came back as positive

Is this test RT PCR reliable enough to detect the BCR ABL or is biopsy the only

way? Why 2 completely different results from the same method (RT PCR)?

The blood test taken in my country (indonesia) was done at 8 AM (the doc in my country said

that blood test for BCR ABL have to be done at 8 AM to ensure freshness and

accuracy, it takes one month)

The blood test in Singapore was taken at 2 PM and takes only one week.

[ritan/]

i can't really answer this for you, however, when i was diagnosed i was told the only way to definitely know was a bone marrow biopsy. i don't know that this is true, but it is what my oncologist at the time told me.

[CallMeLucky]

I don't understand why your doctors are not doing cytogenetics.  They are looking for BCR/ABL when they first need to be looking for Philadelphia chromosome.  You need a bone marrow biopsy and if that can't be done, then you need a FISH on peripheral blood to determine if you are PH+

[Trey]

The most likely options are:

1) You could have CML, but at an early stage where the BCR-ABL is barely detectable by PCR.  So one PCR detected it but the other did not. 

2) The first PCR could be a lab error, so you would have some other disease

You have something wrong with you, as indicated by the high platelets.  Often in CML, the high platelets are an early indicator of CML in the developing stage.  Since your WBC is still normal, CML is a possibility.  But because of the normal WBC, a bone marrow biopsy would probably not be able to detect the Philadelphia Chromosome, since it would be at a very low level. 

Given that you have low income, no insurance, and need to fly to another country for a BMB, having a BMB now may not be the best approach for you.  You  should ask the doctor what the first PCR result was, and if the first PCR for BCR-ABL was very low, then you could wait for a while and continue to have your WBC monitored.  If it goes up significantly (above 25,000) then you should have a BMB done. 

The issue is that you have some disease and do not know what it is.  A BMB might show what it is, but maybe not yet.  These are issues that you need to consider because of your individual situation.  If I were in your situation, I would probably wait and watch the blood tests for a while.  In my own situation with insurance, I would proceed with additional tests, including the BMB.

[whitemomo]

yep, the doctor told me the same thing: to monitor my complete blood count every 3 months.

as for the platelet, the doctor asked for JAK2 test and it came back as positive. He told me that I have moderate thrombocytosis and prescribed agrylin to control my platelet.