As Alice said, (Disney version, sang) "I give myself very good advice, but I very seldom follow it." I know I should not give in to disappointment, but I my latest PCR was .05% IS. I had gotten my first "undetectable" on the one three months before it. I have several times been lower than .05 in the past few years, as well. If I were giving myself advice, I'd say this could be wrong, it could be a blip, it could be in only one of the halves of the sample, it's probably noise, it's very close and when newly undetectable you can hover in the neighborhood of detectable for awhile, it's still very, very good. But, I'm still really, really, really disappointed. Must rally.
Disappointed. No PCRU.
Started by
kat73
, Nov 01 2015 02:19 PM
10 replies to this topic
#1
kat73
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Posted 01 November 2015 - 02:19 PM
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#2
Buzzm1
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Posted 01 November 2015 - 03:28 PM
Kat, not unusual to have it bounce around ... hoping you will stabilize at PCRU too
Weakly positive .. below the validated linear range
0.0029 ratio ..log change is -3.3135
Weakly positive .. below the validated linear range
PCRU
PCRU
Weakly positive .. below the validated linear range
PCRU
Buzz
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
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#3
Trey
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Posted 01 November 2015 - 03:34 PM
Your lab probably has a 4.5 log cut-off for reporting. So your current .05% is very near that. Virtually the same result. And as I have told many people, I only trust PCRU when it happens twice in a row. That helps avoid disappointment to some degree, but it is still not what a person wants to see.
This also helps show how after initial PCRU there is yet another possibly long road ahead to "near true zero" where only a handful of leukemic cells might remain, and these cells are generally high level stem cells in quiescence (resting while hiding in the marrow stromal layer niche). At initial PCRU there are still about a million leukemic cells in the body. Most of these 1 million remaining leukemic cells must be eliminated before someone attempts drug cessation. A person might hover in barely PCRU for quite a while.
#4
CallMeLucky
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Posted 01 November 2015 - 10:41 PM
Not uncommon. Frustrating and not what you want, but not uncommon.
You're in a real good place, perfect is the enemy of good!
Hang in there
You're in a real good place, perfect is the enemy of good!
Hang in there
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
kat73
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Posted 02 November 2015 - 05:02 PM
Thanks, guys. I thought of something else cheering: can't remember where I saw the quote, but I wrote down that Dr. Cortes once said that anything less than 0.09% IS is "outstanding" and "indistinguishable from PCRU." That helps keep things in perspective.
Trey: if you put one million leukemic cells single file, like ants in a conga line with hands on the shoulders of the ant in front, how long a line would it be? Would it be visible to the naked eye?
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#6
scuba
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Posted 02 November 2015 - 07:39 PM
Thanks, guys. I thought of something else cheering: can't remember where I saw the quote, but I wrote down that Dr. Cortes once said that anything less than 0.09% IS is "outstanding" and "indistinguishable from PCRU." That helps keep things in perspective.
Trey: if you put one million leukemic cells single file, like ants in a conga line with hands on the shoulders of the ant in front, how long a line would it be? Would it be visible to the naked eye?
One drop of blood contains as many as 5 million blood cells. One million blood cells - leukemic or not would be - well - one fifth the volume of one drop. Visible? barely ... take that one million and spread it out throughout your body - and no wonder they never show up under the microscope. They are too few in number - by volume.
Dr. Cortes is quite correct. Once MMR is achieved, CML is under control for the vast majority. We are fortunate to have the TKI's.
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"
#7
kat73
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Posted 03 November 2015 - 10:50 AM
Wow, Scuba, what a visualization! It really is a tiny, tiny amount when it's down to a million. It makes you think how terrible the situation can be at the other end of the spectrum - how many trillions of leukemic cells there must be - and wonder how long it takes for all that gap to be filled if things are let loose. Scary and awesome, all at once.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#8
PhilB
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Posted 05 November 2015 - 12:23 PM
Trey: if you put one million leukemic cells single file, like ants in a conga line with hands on the shoulders of the ant in front, how long a line would it be? Would it be visible to the naked eye?
Well that's gonna keep Trey busy for a while. Whatever you do don't ping him and make him lose count...
#9
kat73
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Posted 05 November 2015 - 12:43 PM
I'm waiting!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#10
Trey
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Posted 05 November 2015 - 03:44 PM
A WBC conga line could stretch around the earth and touch itself from the other direction and you would not see it because it is not wide enough to be visible. THINK, PEOPLE, THINK!!!!! And you certainly could not tell if they were naked. That is a bit of an odd thing to ask, whether you could see naked blood cells conga-ing. Very odd indeed. Must erase from memory -- thinking of moose and buffalo.
Take that Mr Maths-R-Us, Exchequer To the Queens Toilet Bowl Cleaner Society......Lose count my a$$.......Speaking of losing count, that loser squirrel Herodotus has not surfaced lately. Just as well. He is always into some sort of trouble.....naked cells conga-ing....must erase.
And another thingy. A million leukemic cells is approximately 8 per each drop of blood in the body. It takes how many to start CML? Anyone.....Anyone?
Take that Mr Maths-R-Us, etc. etc. ad nauseam.
Edited by Trey, 05 November 2015 - 03:48 PM.
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