Hello everyone I was hoping some one could help me by explaining my current blood work . My onc said that I didn't hit remission but he didn't think I would only after 2 and half months on gleevec . My current readings were 0.642 and my history or on 9.22.14 was at 1.87 and 100% on the IS on 10/2/2014. He wants to keep me on Gleevec for a while longer . I am sure what all this means , I was to worried about a small swollen lymph node that he said I shouldn't worry about either .
BCR-ABL1/ABL 1
Started by
Jerry.s
, Dec 10 2014 09:19 PM
16 replies to this topic
#2
Jerry.s
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Posted 10 December 2014 - 09:24 PM
Wait I think the 9-22 date is wrong it has a t(9;22) I don't think that's a date .
#3
Buzzm1
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Posted 10 December 2014 - 09:50 PM
Wait I think the 9-22 date is wrong it has a t(9;22) I don't think that's a date .
The Philadelphia chromosome orPhiladelphia translocation is a specific chromosomal abnormality that is associated with chronic myelogenous leukemia (CML). It is the result of a reciprocal translocationbetween chromosome 9 and chromosome 22, which is specifically designated t(9;22)(q34;q11)
http://en.wikipedia....phia_chromosome
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
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#4
CallMeLucky
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Posted 10 December 2014 - 10:18 PM
0.642 after two months is very good. 0.1 is MMR you are making good progress. Stay the course. Swollen lymph nodes are common for a host of reasons, make sure doctor checks them but don't dwell on it.
Relax looks like you are doing good.
Relax looks like you are doing good.
Date - Lab - Scale - Drug - Dosage MG - PCR
2010/Jul - MSKCC - Non-IS - Gleevec - 400 - 1.2%
2010/Oct - MSKCC - Non-IS - Gleevec - 400 - 0.25%
2010/Dec - MSKCC - Non-IS - Gleevec - 400 - 0.367%
2011/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.0081%
2011/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%
2011/Sep - MSKCC - Non-IS - Gleevec - 400 - 0.00084%
2011/Dec - MSKCC - Non-IS - Gleevec - 400 - 0%
2012/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.004%
2012/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%
2012/Sep - MSKCC - Non-IS - Gleevec - 400 - 0%
2012/Dec - MSKCC - Non-IS - Sprycel - 100 - 0%
2013/Jan - Quest - IS - Sprycel - 50-60-70 - 0%
2013/Mar - Quest - IS - Sprycel - 60-70 - 0%
2013/Apr - CUMC - Non-IS - Sprycel - 50 - 0.036%
2013/May - CUMC - Non-IS - Sprycel - 50 - 0.046%
2013/Jun - Genoptix - IS - Sprycel - 50 - 0.0239%
2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0192%
2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0034%
2013/Oct - Genoptix - IS - Sprycel - 70 - 0.0054%
2014/Jan - Genoptix - IS - Sprycel - 70 - 0.0093%
2014/Mar - Genoptix - IS - Sprycel - 100 - 0.013%
2014/Apr - Genoptix - IS - Sprycel - 100 - 0.0048%
2014/Jul - Genoptix - IS - Sprycel - 100 - 0%
2014/Nov - Genoptix - IS - Sprycel - 100 - 0.047%
2014/Dec - Genoptix - IS - Sprycel - 100 - 0%
2015/Mar - Genoptix - IS - Sprycel - 100 - 0%
2015/Jun - Genoptix - IS - Sprycel - 100 - 0%
2015/Sep - Genoptix - IS - Sprycel - 100 - 0%
2015/Dec - Genoptix - IS - Sprycel - 100 - 0%
2016/Mar - Genoptix - IS - Sprycel - 100 - 0.0228%
2016/Jun - Genoptix - IS - Sprycel - 100 - 0%
2016/Sep - Genoptix - IS - Sprycel - 100 - 0%
2016/Dec - Genoptix - IS - Sprycel - 100 - 0%
2017/Mar - Genoptix - IS - Sprycel - 100 - 0%
2017/Jun - Genoptix - IS - Sprycel - 100 - 0%
2017/Sep - Genoptix - IS - Sprycel - 100 - 0%
2017/Dec - Genoptix - IS - Sprycel - 100 - 0%
#5
Jerry.s
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Posted 10 December 2014 - 10:19 PM
Thanks buzz do u know if that's a good drop
#6
Jerry.s
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Posted 11 December 2014 - 07:07 AM
Thanks lucky, I was about to freak out but I guess I should trust what my doctor says . That everything looks good moving forward
#7
hannibellemo
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Posted 11 December 2014 - 07:49 AM
Hi, Jerry,
You're going in the right direction! Do you know what your doc meant by keeping you on Gleevec "for a while longer"? The current thinking is that these are drugs we stay on for a life time. There will be a few of us who after several years may attempt to stop taking the drug and will be successful, but for most of us, we're here for the duration! 
Also, remission is not a term generally used with CML. Docs refer to our "response" to our drug. Your response is very good, BTW! CML doesn't really have a remission in the sense that most people refer to remission as no longer having detectible cancer. Even when we're considered "undetectible" by PCR for BCR/ABL we have millions of BCR/ABL in our blood. Confusing isn't it? Even the acronyms are mind boggling.
I'm pretty sure you know this, but since you're relatively new to CML I wanted you to be able to ask your onc questions about what he/she says to you. The more we know about our disease, the more we can relax and just let the TKIs do all the heavy lifting.
Good luck!
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
#8
Jerry.s
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Posted 11 December 2014 - 11:02 AM
^^ I think I used the word remission , he used undetected . He meant not switch your from gleevec to some other TKI for a better result . He was happy with result and so he said were gonna with Gleevec . Sorry I pretty new some so I get all the lingo wrong .
I had a bunch of questions but when he found my swollen lymph node my mind went blank
I had a bunch of questions but when he found my swollen lymph node my mind went blank
#9
chrissy778
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Posted 11 December 2014 - 12:56 PM
Jerry, you might be fighting a cold. I had a small lymph node I kept feeling on my neck a few months ago but my Dr said it was nothing to worry about... Yeah right lol but it did go away.. After reading your post I immediately felt my neck again. Its still gone..
Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of
#10
hannibellemo
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Posted 11 December 2014 - 03:52 PM
Jerry,
I know what you mean about your mind going blank when you hear something scary! I got all freaked out once when I had a small bump on the side of my neck. I just knew it was something awful - turns out it wasn't even a lymph node! It was probably a bite or something.
I posted somewhere else that I wish I could go back to Gleevec (probably can't, my liver didn't like at all) because I had fewer, but more interesting side effects, it worked and it will be much cheaper in the years to come. I'd stick with it as long as it is working and you tolerate it well.
I don't believe there are any studies indicating that those who are PCRU fare any better than those who are CCyR. Although, mentally it may be easier to be PCRU, I would constantly be worrying about staying there, so maybe not!
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
#11
chrissy778
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Posted 11 December 2014 - 04:12 PM
MMR= Major Molecular Response That's where your Pcr is .1 or below Does PCR stand for Philadelphia Chromosome Response? Also PCRU and CCyR ? I would be guessing but could you tell me what they mean.. Thank you
Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of
#12
Antilogical
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Posted 11 December 2014 - 04:18 PM
PCR = Polymerase Chain Reaction. It's a test that is done on DNA segments.
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.
#13
hannibellemo
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Posted 11 December 2014 - 04:26 PM
CCyR is Complete Cytogenetic Response - 1%. PCR is the blood test, it can also be done on marrow, to check for BCR/ABL. PCRU means the BCR/ABL is Undetectible in the PCR blood test.
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
#14
Trey
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Posted 11 December 2014 - 04:54 PM
Jerry,
You are doing well so far. Your Onc is either a very poor communicator or does not know what he is doing. Neither are good qualities.
To understand PCR testing and various issues read this tutorial:
http://community.lls...l=+cml +testing
#15
chrissy778
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Posted 11 December 2014 - 05:21 PM
Just read the above attachment and saved it to my computer . Thank you
Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of
#16
Jerry.s
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Posted 12 December 2014 - 12:07 AM
Awesome thanks guys , I would go nuts with out your feed back. Thanks for link Trey, good link
#17
pammartin
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Posted 14 December 2014 - 09:53 PM
Every time I have trouble with my sinus' my nodes tend to swell. First few times, well first months after diagnosis I drove myself nuts. After quite a while I realized my swelling had little or nothing to do with my CML. It didn't happen quickly, and every once in a while I still have a mini melt down if I find a swelling. Trust these great people and their thoughts and advice. This is a good place.
Take care
Pam
Take care
Pam
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