Advanced Member
Posted 26 March 2015 - 09:19 PM
Sooooo, I get a call today and am told that I am up to .78% from .50% three months ago.
I know its just a tick, one count doesnt make a trend, I'm within the margin of error, etc...
But this is my first up tick... and (against all reason and logic) freaking out a bit
14%
7%
1%
.50%
.78%
Can a brother get some pats on the head?
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
Advanced Member
Posted 26 March 2015 - 11:19 PM
You are possibly in the plateau stage that Trey talks about, when is your next test due?
Advanced Member
Posted 27 March 2015 - 09:02 AM
yeppppp It stinks when its you 
I had the same thing just happen. now I'm on an increased dose.........uuhhhgggg I feel your frustration!
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
Advanced Member
Posted 27 March 2015 - 09:32 AM
gerry - 2.5 months
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
Advanced Member
Posted 27 March 2015 - 12:13 PM
Can a brother get some pats on the head?
I don't know anything about the numbers or terminology, but a pat on the head I can do. Nobody knows how utterly frustrating and terrifying any of this can be unless you're in this club. Hoping your numbers are better next time. Keep us posted.
Dx: 01 March 2011
Sprycel 100 mg per day since dx
MMR: July 2013
numerous side effects
Thankful for the gift of each new day, and try to live it to the fullest 
Advanced Member
Posted 27 March 2015 - 03:19 PM
hey, JPD, that's a plateau. that's trey's theory of tasigna plateau after 1 or 1 and a half years. you'll do ok 
Advanced Member
Posted 29 March 2015 - 03:03 PM
What IS the margin of error, btw?
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
Advanced Member
Posted 29 March 2015 - 04:14 PM
So .50 up to .78 is well within that?
edit: not that I havent accepted the fact that I might have plateaued a bit, but you know...
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
Advanced Member
Posted 29 March 2015 - 06:28 PM
Hi jpd,
Sorry about your numbers, with this crappy disease any changes cause us to panic. From what i've read from others their numbers jump around a lot for a while then they seem to settle down. After seven years I still get antsy when I get bw every month until I get the phone call saying I'm still undetectable. I'm sure they'll go down again. Here I'm patting you on the head feel it?
Billie
Advanced Member
Posted 29 March 2015 - 07:50 PM
Ahhhh, I'm sorry 
As you know, most of us know what this feels like and it stinks!
Billie's right, most of the time it just goes down again - we just have to be patient. My last one went up again after an extended period of being pretty low. It's not the greatest feeling, but I'm just hanging out, waiting for my next test. We have to live our lives in the meantime anyway, don't we...
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Advanced Member
Posted 29 March 2015 - 09:01 PM
Advanced Member
Posted 30 March 2015 - 12:42 AM
I agree Pam - it's a hard thing to explain to someone who doesn't have to have constant testing and waiting and anxiety around those two things. Imagine if we could be declared 'cancer-free' after 7 years....maybe one day hey.
In the meantime, I am grateful for what I have and a bit sad sometimes about the things I don't.
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Advanced Member
Posted 30 March 2015 - 06:51 AM
Well said Pin, well said.
Advanced Member
Posted 30 March 2015 - 09:19 AM
Can a brother get some pats on the head?
Easiest way is to bend down behind a cow.
Half a log is roughly a threefold rise or fall so you are well within that. Basically your numbers have been pretty well flat for the last 6 months. It's a bit like skiing down a hill - you get the steep bits you zoom down then flatter bits you go slowly along . The big difference of course is that in skiing I believe it's the steep downhill bits that can be terrifying, while in CML it's the flat bits and the bumps that drive us crazy.
Advanced Member
Posted 30 March 2015 - 11:05 AM
hey, jpd, as philb said, a three fold increase is within the margin of error (a had a twofold increase once and many other here had the same problem). try not to worry much and take your meds everyday. good luck
Advanced Member
Posted 31 March 2015 - 08:07 PM
Pin's dog makes a shadow like the map of Australia.
That does not answer any questions but it is very interesting nonetheless.
It's a$$ end would be Perth.
Advanced Member
Posted 31 March 2015 - 08:23 PM
I'm slightly amazed you know where Perth is. lol
Advanced Member
Posted 01 April 2015 - 07:11 PM
I always thought that too! Fortunately, I'm at the head end...
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
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