I have been on Gleevec for 15 months now. I have had very good response and my 1-year PCR was 0.0019%. I had my 15-month appointment yesterday and asked my onc about dose reduction if this latest PCR was undetectable. He was very open to this and said that he would change my dose to 300mg if this is the case. Just thought that I'd share as there seems to be a lot of variation between Docs who support dose reduction and those who don't. My Doc out of Dana Farber in Boston who is a CML specialist was very open to this change.
8 replies to this topic
#1
trailcml
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Posted 16 June 2016 - 10:21 AM
Diagnosed Age: 45
Diagnosed Date: Feb-19-2015
Drug/dose: Imatinib 300mg (reduced from 400mg on 1/31/2017)
Drug/dose: Imatinib 200mg (reduced from 300mg on 11/15/2017)
0 Month PCR = 20%
3 Month PCR = 0.3%
6 Month PCR = 0.03%
9 Month PCR = 0.019%
12 Month PCR = 0.0095%
15 Month PCR = 0.0104%
18 Month PCR = 0.0095%
21 Month PCR = 0.0038%
4/5/2017 PCR = 0.0057%
8/23/2017 PCR = 0.0096%
12/13/2017 PCR = 0.0114%
#2
beno
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Posted 16 June 2016 - 10:57 AM
I know I'm just getting started on treatments, but my doc actually brought up the issue to me at my last visit. She said she doesn't like to reduce dosage unless side effects are severe, like pleural effusion.
DX 3/30/2016 WBC 484.2 FISH 95.3
took Hydrea 3/30-4/11
taking Sprycel 100 mg since 4/5
10 day break from Sprycel for platelet count of 12 4/26-5/8
7/07/2016 1.47% (IS)
9/30/16 BMB PCR .1259 switched to new onc
12/30/16 PCR .1569
4/7/17 PCR .0904 MMR
7/14/17 PCR .0520
12/1/17 PCR .0148
#3
Buzzm1
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Posted 16 June 2016 - 10:57 AM
trailcml, I'm an advocate of TKI dosage reduction. From everything that I have seen, once PCRU is reached, it doesn't require a high TKI dosage to maintain PCRU, although I would personally wait for a confirming PCRU before reducing to Gleevec 300mg, as bounces in and out of an initial PCRU can, and do, occur.
Being PCRU means that the CML is undetectable to the level of testing being done (most PCR testing is currently MR4.5). I read somewhere that evidence existed that the TKI continues to reduce the level of CML in the ensuing years beyond PCRU. Testing can now be done to MR6.
Good Luck to you.
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
#4
scuba
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Posted 16 June 2016 - 11:34 AM
trailcml, I'm an advocate of TKI dosage reduction. From everything that I have seen, once PCRU is reached, it doesn't require a high TKI dosage to maintain PCRU, although I would personally wait for a confirming PCRU before reducing to Gleevec 300mg, as bounces in and out of an initial PCRU can, and do, occur.
Being PCRU means that that CML is undetectable to the level of testing being done (most PCR testing is currently MR4.5). I read somewhere that evidence existed that the TKI continues to reduce the level of CML in the ensuing years beyond PCRU. Testing can now be done to MR6.
Good Luck to you.
Testing can now be done to MR6.
As testing improves so will the number of false positives. At what point is CML "cured"? It is pretty certain that all people produce CML cells. The translocation of the 9;22 chromosome is too easy to occur. It takes many cells, however, to produce enough bcr-abl protein in order to trigger an immune response which can eradicate the aberrant cells - but not necessarily all of them. Various levels of bcr-abl protein are probably circulating around many many people in the general population.
What we need is a clinical study on the general population using these new PCR techniques to discover what is a normal level of bcr-abl. It is the failure of our immune system that enables bcr-abl (CML) to expand and become disease not the fact that a single cell transforms itself through mutation into bcr-abl.
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"
#5
gerry
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Posted 16 June 2016 - 04:47 PM
I also believe that there are different triggers on the immune system for each of us as to why the CML emerges.
#6
cedespres
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Posted 16 June 2016 - 08:10 PM
I have been on Gleevec for 15 months now. I have had very good response and my 1-year PCR was 0.0019%. I had my 15-month appointment yesterday and asked my onc about dose reduction if this latest PCR was undetectable. He was very open to this and said that he would change my dose to 300mg if this is the case. Just thought that I'd share as there seems to be a lot of variation between Docs who support dose reduction and those who don't. My Doc out of Dana Farber in Boston who is a CML specialist was very open to this change.
Hi trailcml,
I was on gleevec for 6 mos but had to change to sprycel. I am in Rhode Island and have an appointment on June 29th at Dana Farber to see Dr. Stone. Is he the Dr. that you go to? I would like to explore low dose because of fluid build up including CHF.
Tnanks. Ed
#7
Buzzm1
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Posted 16 June 2016 - 09:56 PM
trailcml, any thought as to how long you would remain on Gleevec 300mg before reducing further?
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
#8
trailcml
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Posted 17 June 2016 - 09:29 AM
Ed, my onc @DF is Dr. Dan Deangelo. I have liked him since day one. I was originally sent to an onc who wasn't a CML specialist who wanted to put me on a different treatment plan. But, after multiple discussions with some other experts, I was referred to Dr. Deangelo and he's been great and in support of the change original treatment plan. I don't know Dr. Stone.
(Oh, the original onc was very supportive of my change to DF and Dr. Deangelo as well. I just feel the need to say that because he was really good in the dx / process as well.)
Diagnosed Age: 45
Diagnosed Date: Feb-19-2015
Drug/dose: Imatinib 300mg (reduced from 400mg on 1/31/2017)
Drug/dose: Imatinib 200mg (reduced from 300mg on 11/15/2017)
0 Month PCR = 20%
3 Month PCR = 0.3%
6 Month PCR = 0.03%
9 Month PCR = 0.019%
12 Month PCR = 0.0095%
15 Month PCR = 0.0104%
18 Month PCR = 0.0095%
21 Month PCR = 0.0038%
4/5/2017 PCR = 0.0057%
8/23/2017 PCR = 0.0096%
12/13/2017 PCR = 0.0114%
#9
trailcml
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Posted 17 June 2016 - 09:31 AM
Buzz, that's an interesting question. I guess I'd check in with my onc and get his feedback before I reduced dose further when I meet with him next. But, I first need to get to PCRu! Fingers crossed...
Diagnosed Age: 45
Diagnosed Date: Feb-19-2015
Drug/dose: Imatinib 300mg (reduced from 400mg on 1/31/2017)
Drug/dose: Imatinib 200mg (reduced from 300mg on 11/15/2017)
0 Month PCR = 20%
3 Month PCR = 0.3%
6 Month PCR = 0.03%
9 Month PCR = 0.019%
12 Month PCR = 0.0095%
15 Month PCR = 0.0104%
18 Month PCR = 0.0095%
21 Month PCR = 0.0038%
4/5/2017 PCR = 0.0057%
8/23/2017 PCR = 0.0096%
12/13/2017 PCR = 0.0114%
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