Member
Posted 12 October 2017 - 09:39 PM
Hi Everyone,
I was on this forum just a bit when first dx. You have all been SO helpful, I'm very grateful to have found all the wisdom here!
So, Tuesday my doctor very willingly agreed for me to try stopping Tasigna. I'm excited and nervous and full of questions!
First one is: I keep seeing that testing should be done often, my doc says every 3 months. I negotiated her down to 2 months. Should we really be testing every month? Are there authoritative sources I could take to her?
Thanks much!
DX 09-2011 PCR 8.08 not IS WBC 17 , Began Tasigna 600mg
in 2012 Tasigna 450mg/day ,in 2013-2017 Tasigna 300mg/day
DATE/PCR
09-11/ 8.08 not IS
03-12/ 0.054 not IS
06-12/ 0.035 not IS
09-12/ PCRU, 01-13/ PCRU
4-13/ 0.042 IS
7-13/ 0.014 IS
11-13/ PCRU, 04-14/ PCRU
8-14/ 0.006 IS
PCRU: 12-14/ 05-15/ 10-15/ 02-16/
09-16/ 02-17/ 09-17/
10-17 tapered off
11-3-17 Stopped Tasigna
1-15-18 still PCRU
Advanced Member
Posted 12 October 2017 - 10:14 PM
Lori, testing is done every month when someone is participating in a Stop Study/Stop Trial for the purpose of gathering detailed statistics.
If you aren't participating in a Stop Study how often you test is up to you and your onc..
Testing after one month doesn't usually provide much in the way of very meaningful information.
Testing after two months usually does provide meaningful information and often indicates whether one is heading towards losing MMR.
If you are still undetectable when you test at two months, test again in three more months.
For those losing MMR during Stop Studies, the average is between 3 and 4 months.
Here is a summary of eight forum members who attempted cessation: http://community.lls...ypcru/?p=196277 click on the individual links for more detailed information.
Thanks for adding your history into your Signature.
Good Luck to you,
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
Member
Posted 13 October 2017 - 08:28 AM
Thanks very much, Buzzm1,
That's very helpful.
I thought the suggestion to put history in the signature was a great idea, I'd always found it hard to keep people's stories straight!!
DX 09-2011 PCR 8.08 not IS WBC 17 , Began Tasigna 600mg
in 2012 Tasigna 450mg/day ,in 2013-2017 Tasigna 300mg/day
DATE/PCR
09-11/ 8.08 not IS
03-12/ 0.054 not IS
06-12/ 0.035 not IS
09-12/ PCRU, 01-13/ PCRU
4-13/ 0.042 IS
7-13/ 0.014 IS
11-13/ PCRU, 04-14/ PCRU
8-14/ 0.006 IS
PCRU: 12-14/ 05-15/ 10-15/ 02-16/
09-16/ 02-17/ 09-17/
10-17 tapered off
11-3-17 Stopped Tasigna
1-15-18 still PCRU
Advanced Member
Posted 13 October 2017 - 08:49 AM
You should test every month for the first six months. If no up trend, then testing can continue every three months as before stopping.
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 14 October 2017 - 11:15 AM
Lori
I stopped last november 2016 and since then have been getting pcr test + a few other things every 6 weeks. I am not part of a study. If I make it to November 2017 still undetectable I believe the plan is to go back to every 3 months. Not sure if any hard and fast rules on this, I suspect it is more to do with how comfortable you are with your time interval in between. Hope this help, good luck.
dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16
Advanced Member
Posted 14 October 2017 - 04:10 PM
Advanced Member
Posted 14 October 2017 - 05:01 PM
When the CML comes back some people come back with "grumbling" numbers but I suspect it is actually more common for it to come back fast. Every time I have stopped (pregnancy) related it has come back fast and the rate at which my numbers have risen is approximately 1 log per month. So testing every 2 months potentially could see you with a 2 log rise. Personally I would be mildly comfortable at 2 monthly testing while PCRU but would prefer monthly. If you become detectable I'd need monthly to be comfortable.
Maybe not relevant to your situation but this what we did. We tested 6 weeks from stopping but we were not planning to catch a relapse early rather start interferon treatment when the PCR was greater than 1. Once I lost PCRU we tested every 3-4 weeks to work out when to start interferon and how the dosing was working.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Member
Posted 21 October 2017 - 06:52 PM
I found a definitive answer!! In Dr. Michael Mauro presentation to LLS he gives slide 31, a page of new rules being published as part of NCCN about discontinuation.
Says to monitor monthly for first 6 months, bimonthly months 7-24, and quarterly thereafter indefinitely!
[Slide 31 also covers rules for who should be eligible to stop, as well as criteria for restarting meds]
Link to slides: http://www.lls.org/s...gram Slides.pdf
DX 09-2011 PCR 8.08 not IS WBC 17 , Began Tasigna 600mg
in 2012 Tasigna 450mg/day ,in 2013-2017 Tasigna 300mg/day
DATE/PCR
09-11/ 8.08 not IS
03-12/ 0.054 not IS
06-12/ 0.035 not IS
09-12/ PCRU, 01-13/ PCRU
4-13/ 0.042 IS
7-13/ 0.014 IS
11-13/ PCRU, 04-14/ PCRU
8-14/ 0.006 IS
PCRU: 12-14/ 05-15/ 10-15/ 02-16/
09-16/ 02-17/ 09-17/
10-17 tapered off
11-3-17 Stopped Tasigna
1-15-18 still PCRU
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