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Help: What to track? How to do it?

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#1 Marathon


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Posted 11 November 2012 - 03:16 AM

I have been lately reading hundreds (thousands?) of posts in the CML discussion group.

I still find troubles to follow all the abbreviations used when talking on tests results: to name some FISH, PCR, BCR/ABL, etc.

I am new to the Forum, and in a way as a CML patient. Diagnosed 9 months ago and my test results are progressing as they should be. However I do not have this knowledge on all the indicators you usually mention and I would also like to be honest to have that info clear on my side.

My dates with my Dr. are of the type: "things are how they should be: all progressing in the right direction and with the right timings"

The more I read here, the more I understand and the more I think I should have my indicators clear on my side as well.

1.- Can anyone tell me please the meaning of the most common abbreviations you use here?

2.- Can anyone help in telling me the indicators I should track as if I were a newly diagnosed? With that set of indicators I will reconstruct my 9-month life after DX (this abbreviation one I got it right !!!!   ). I hope then to be able to share "my case" with people in this forum that are much more knowledgeable than I am and try to get their valuable feedback.

I feel as if I have to learn first the language you speak guys (and also have a clear picture of the progression of my indicators).

Thanks to all for the great support that this forum means. I have enjoyed these last weeks reading the "history" in this forum.

#2 Antilogical


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Posted 11 November 2012 - 11:03 AM

There's a lot to digest, isn't there.

Much has been posted on terms & definitions, but those blog pages are hard to find here after a while.  Meanwhile, the very site that sponsors this blog (the LLS) has tons of great information & support links, as do other cancer sites.  Trey's blog has tons of info & links, too.  Here are a few links....






Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.

#3 Marathon


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Posted 11 November 2012 - 11:25 AM

Thanks Antilogical !!!

Great links to start with.

...... I keep on digesting then.

#4 ritan/


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Posted 11 November 2012 - 02:27 PM

what i've gleaned is that all the information from regular blood draws is largely irrelevant. (don't bother tracking it unless you're having issues with low platelet counts or such). i assume that a doctor uses them to make certain that things are progressing normally, but if your counts are largely normal, the only thing that a cbc is going to tell you is if there is a radical change, or perhaps an infection.

what you do want to track is bcr-abl test results. these tell you whether you are appropriately meeting deadlines in care. if you get the chance go to a 'living well with CML" panel discussion. https://www.seeuther...6&sutGuid=41224

i felt like i learned more in that one 4 hour discussion than i did from a year of care by my local onc. who told me things like: your test results were up a bit. but everything is fine.

when i actually got the results of my bcr-abl tests and charted them on a chart they handed out, it told me enough to send me running to a new onc. i wish i had know n this info a year ago when things first started going sideways.

#5 Trey


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Posted 11 November 2012 - 07:35 PM

You might want to read this first and see what remaining questions you have:


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