Yep every time I felt funny i would run and grab a PCR test.
"My Introduction" and "6 Month PCR Results"
#41
Posted 29 April 2016 - 01:55 PM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
#42
Posted 29 April 2016 - 02:38 PM
Yep every time I felt funny i would run and grab a PCR test.
Same here I would go broke buying them too as I assume they would be well over $500 if such a product existed.
Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
0-27 Months Rx: Sprycel 100mg
Current Rx: Sprycel 50mg
0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.051%
24 Month PCR = 0.047%
27 Month PCR = ?.???%
#44
Posted 29 April 2016 - 03:32 PM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
#45
Posted 29 April 2016 - 03:38 PM
Here you go:
Wow! For some reason I imagined it being way larger and more expensive haha. I would love to see the look on my girlfriends face if she woke up and came out to the living room and saw me settings this up. Good thing it's more than $1000 or I might have considered buying it haha
Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
0-27 Months Rx: Sprycel 100mg
Current Rx: Sprycel 50mg
0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.051%
24 Month PCR = 0.047%
27 Month PCR = ?.???%
#46
Posted 29 April 2016 - 03:42 PM
Yeah I have a huge super computer in mind with all kinds of smart people in white coats working on it. If this is all it really is then why does it take so long for results?
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
#47
Posted 29 April 2016 - 03:43 PM
... it's not the device (cost), it's the prep work. Prep is the time consuming, labor intensive part and fraught with errors at almost every step.
http://www.thermofis...r-pitfalls.html
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"
#48
Posted 29 April 2016 - 03:55 PM
... it's not the device (cost), it's the prep work. Prep is the time consuming, labor intensive part and fraught with errors at almost every step.
Wow that sounds incredibly sensitive and prone to failure.
Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
0-27 Months Rx: Sprycel 100mg
Current Rx: Sprycel 50mg
0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.051%
24 Month PCR = 0.047%
27 Month PCR = ?.???%
#49
Posted 29 April 2016 - 05:12 PM
Wow that sounds incredibly sensitive and prone to failure.
Which is why, John from Chicago, you would be wasting your time trying to over analyze a few data points. One blood sample tested repeatedly with the same equipment and procedure can yield data one log in variation (e.g. from 0.01% to 0.1%) - typically one-half log. The test just isn't that sensitive. What's important is trend over time from the same lab. And don't bother to extrapolate - it's pointless. Each test done 3 months apart has its own dynamics in terms of your actual blood situation and the testing protocol. The reason why PCR is significant early is that many patients experience log over log drops in PCR as treatment works. Then they plateau and play this 4 decimal place analysis game. Be smart and realize what the test is, what it does and how to interpret the results.
Here goes:
1.PCR > or = 100% .... usually at diagnosis.
2. PCR < 100% > 1% ... trending downward.
3. PCR > 0.1% < 1.0% major milestone - usually cytogenetic remission. Correlates roughly with FISH = zero. This is a home run. CML is under control.
4. PCR <0.1 % ... Major molecular remission (prognosis for long term survival greater than 95% ... Patients will die of something else not CML. )
5. PCR < 0.01% ... beyond the limit of the test and is sometimes reported as "undetected" or barely "detected". Some of these patients can enjoy thinking about stopping treatment - they might be able to have treatment free survival (TFR).
That's it. Third decimal place reporting is erroneous, meaningless and only serves to scare people.
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"
#50
Posted 29 April 2016 - 05:16 PM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
#51
Posted 29 April 2016 - 05:25 PM
http://www.cmlsuppor...ponse-treatment
Q-PCR test results reported according to the International Standard
0.1% MR3
0.01% MR4
0.0032% MR4.5
0.001% MR5
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 PCR result pending... 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
#52
Posted 29 April 2016 - 08:30 PM
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#53
Posted 30 April 2016 - 02:03 AM
if under 1% is equivalent to ccyr and I am at 0.38, why is my FISH 3.5%.
Maybe your rabbits are constipated?
#54
Posted 30 April 2016 - 08:52 AM
Trey, if under 1% is equivalent to ccyr and I am at 0.38, why is my FISH 3.5%.
We are not all the same. It is a rough equivalence. There are many variables.
#55
Posted 30 April 2016 - 07:54 PM
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#56
Posted 30 April 2016 - 09:43 PM
Here you go:
Makes me glad my specimen is sent out to a CLIA lab.
#57
Posted 30 April 2016 - 10:53 PM
I have actually been hunting twice pheasant and deer, but the hobby didn't really grow on me. Haha. I actually used to fish a lot when I was younger but haven't had much time for it since College (in Central IL). Shooting guns or bows is always fun though. I used to have a few motorcycles myself although never a dirt bike (always wanted to rent one though and hit up some trails). I was rear ended by a cab which put me in the ICU for 3 nights when I was 21 and I decided If I kept riding (at least in the city) I would eventually get in another accident and it could be fatal. Chicago traffic is pretty intense and cabs don't obey the rules of the road. I put about over 20,000 miles on my Yamaha R6 before the accident and decided that would be my last bike until I lived somewhere with less traffic. Going down on desert soil on a dirt bike does not sound fun though either. Thanks for the suggestions someone else actually told us to check out Rollin Smoke BBQ I am a big fan of ribs.
Yeah I'm not so much a fan of hunting either. I enjoy the machinery aspects most....the all you can eat option won't disappoint, and those ribs are the bees' knees. I hear you on bike move, too... but hey, look at life in general, never know what's at the next intersection.
08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)
#58
Posted 01 May 2016 - 03:00 AM
I like the constipated rabbit theory. Makes sense!
But not if you've never heard the PhilB 'Rabbits' explanation of CML testing!
#59
Posted 01 May 2016 - 10:53 AM
And if it's a "duh" I should just get it...I shall blame it on brain fog!
#60
Posted 01 May 2016 - 12:00 PM
Okay, well some years ago I came up with an alternative way of thinking about CML testing for those who couldn't handle all the long words in Trey's explanation.
Imagine your farm is infested with rabbits. When first diagnosed there are so many of them that they are easy to spot. You can even do cytology tests ( the one where they tell you how many of 20 cells are leukaemic) - and they only work if you can spot 20 rabbits actually in the act of reproducing. As your bunny eradication programme takes effect it becomes harder catch enough bunnies in flagrante, so you move to plan B: the FISH test. This involves nuking the rabbits until they glow in the dark, then you can just look out the window and count them as they hop past. Eventually though, there are so few bunnies left that your chances of actually spotting one when you happen to look out the window become too low for this test to work too. At this point we have to get crafty and move onto the PCR test. Instead of trying to count actual bunnies, you go out into the field and count rabbit droppings instead. You then compare the amount of rabbit poo per square metre to the average from previous, internationally standardised rabbit poo experiments to estimate your rabbit population. This is why we talk about 'log reductions'.
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