Advanced Member
Posted 30 November 2017 - 05:13 PM
Curious how many people on our forum have PCR testing every six months?
I just received an email advising me I no longer need PCR testing every three months as I have been doing. Given my status of "undetected", I only need to be tested every six months going forward.
Anyone else on six month testing only?
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"
Advanced Member
Posted 30 November 2017 - 05:24 PM
I'm planning on going to a six-month PCR testing schedule beginning in April, 2018.
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
Member
Posted 30 November 2017 - 05:54 PM
I was on a 6-month schedule after about 2 years of undetected. However, I got back to the 3-month schedule after I started my dosage reduction 8 months ago.
Advanced Member
Posted 01 December 2017 - 09:20 PM
Generally, after two PCRU PCRs a patient can go to 6 month testing intervals unless a dosage reduction occurs.
Member
Posted 02 December 2017 - 12:53 PM
New Member
Posted 08 December 2017 - 01:00 PM
After my November results, I was scheduled for 6 months instead of the 3 months.
KB
Diagnosed March 2016
Gleevec, 400 mg
2016 44.46 0.98 0.15% IS
2017 0.26 0.11 0.05 0.06% IS
2018 May
New Member
Posted 08 December 2017 - 09:23 PM
I've been on 6 month testing for the last 3 years. PCR on M.D. Anderson scale has been between undetected and 0.01% the entire time (most of the time at > 0.01%).
Advanced Member
Posted 08 December 2017 - 10:35 PM
I've been on 6 month testing for the last 3 years. PCR on M.D. Anderson scale has been between undetected and 0.01% the entire time (most of the time at > 0.01%).
.... you probably meant "less than" 0.01% instead of > 0.01% .
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"
New Member
Posted 09 December 2017 - 05:29 PM
Yes, I meant <0.01%. Thanks for the correction!
New Member
Posted 26 December 2017 - 01:59 PM
I too am now on a every 6 month testing schedule. I was "undetectable" on my last PCR in October. Not scheduled to be tested again until April 2018.
Advanced Member
Posted 26 December 2017 - 04:42 PM
Advanced Member
Posted 29 December 2017 - 11:12 AM
I have been tested virtually every 6 weeks because of multiple dose reductions (see signature) over the past 6 months. With 3 successive PCRU's (called "negative" at Mayo), my oncologist said that I could go to every 6 months unless I wanted to do a cessation trial at then end of my first 2 years of treatment. I told him that I did and he said he would like to test every 3 months between now and the beginning of the cessation trial in order to get a consistent recurring pattern of PCR's. I must maintain better than MR 4.5 on all these PCR's in order for him to supervise the cessation. Given how accommodating he has been on allowing dose reductions (from 600 mg to 150 mg in 6 months), I decided not to debate the value of what amounts to one extra PCR test in the next 6 months.
I am unbelievably grateful for my response and that it has improved and held on this current low dose. Side effects are not completely gone, but are worlds better than they were 5 - 6 months ago. I am able to live a pretty normal life and that in and of itself is such a blessing.
Happy New Year to you all.
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
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