Advanced Member
Posted 06 March 2016 - 06:52 PM
Hi Trey, noticed you mentioned this in the nausea thread. Can I ask why you believe the lower dose causing a possible resistance doesn't make sense.....because this is the excuse my Onc always uses.
I checked and there are CML specialists out there that say the same thing. Just wondering why you chose the words "doesn't make sense".
Thanks for your knowledge and guts to try this!! 
Advanced Member
Posted 06 March 2016 - 09:20 PM
I have covered this subject several times, including these posts:
http://community.lls...0mg#entry159133
http://community.lls...ria#entry134459
Advanced Member
Posted 07 March 2016 - 06:03 PM
What is a minimum Gleevec plasma drug level of 500 ng/mL? How do you know this level or compute it and is it the same for all TKI's?
Advanced Member
Posted 07 March 2016 - 06:16 PM
What is a minimum Gleevec plasma drug level of 500 ng/mL? How do you know this level or compute it and is it the same for all TKI's?
You have to have a plasma test to get your levels and that level is specific to Gleevec - I am interested in why the minimum level is now 500 though, I'm going to have one of these tests again soon to see where mine is sitting.
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 07 March 2016 - 06:59 PM
Advanced Member
Posted 07 March 2016 - 07:44 PM
Thanks Gerry 
I think I've been asking for dose reduction for about a year now...we are moving forward though, I'm now allowed to get a test to see what my plasma levels are to see if I'm a candidate for reduction (I can't help but feel as though I'm being set up for failure because my last ones were so lousy!!).
We'll see though I guess! Given all the issues with using plasma levels I don't really see how it's of any use, but I understand the caution.
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 07 March 2016 - 10:47 PM
It is difficult to get Gleevec plasma level blood testing in the US because the US FDA slammed Novartis for sponsoring it, so they stopped. Downunderites can still obtain the testing. But it has not been shown to be relevant. But then again, it has not been shown to be irrelevant. It is somewhat like measuring pudding in terms of furlongs per fortnight minus angle of dangle. The science is not quite there. Besides, the proof of the pudding is in the tasting. Billy would understand this concept. Earth to Billy.....
Advanced Member
Posted 07 March 2016 - 10:54 PM
Advanced Member
Posted 22 August 2016 - 07:25 PM
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 22 August 2016 - 09:14 PM
monitoring blood levels to a therapeutic range much like cyclosporine would be useful tool.
Advanced Member
Posted 23 August 2016 - 05:43 AM
I'm curious if any trials are being done for dosage reduction and if not, why? It seems like that would be the next best thing to the stop trials, dosage reduction, and it could cut costs for insurers.
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
Advanced Member
Posted 23 August 2016 - 03:38 PM
Hi Pin, just read your good news - doing a happy dance for you now. When is your next test? I waited a year before reducing, but some of that was to make my doc okay with the drop as he hadn't done that before. Perhaps 3 PCRUs might be enough for your doc. :-)So, in good news my most recent test was not detected 0.000! Hooray! I obviously sit right on the borderline at this dosage.
My Dr is seeking advice as to whether I can drop to 300mg next -exciting!
My plasma test showed 613, which is up from my last one when I was having trouble with the herbs (i think it was around 300 or so) and I think my pcr was around 0.03 or so at the time.
So somewhat interesting for those interested in plasma tests. I'll get my plasma test done again at the reduced level, just for science's sake apparently.
Advanced Member
Posted 24 August 2016 - 08:19 AM
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 24 August 2016 - 12:38 PM
I look forward to when the NCCN guidelines show dosage reductions as a possibility for some people. Once that happens we should see more OnC's accept it.
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
Advanced Member
Posted 24 August 2016 - 02:00 PM
Hi Gerry, she's asking Dr Hughes what he thinks about me reducing now. I've been <0.01 for several years now so I think it is worth a shot
Pin, you will almost certainly feel increasingly better with every dosage reduction. 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
Advanced Member
Posted 26 August 2016 - 08:01 PM
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 27 August 2016 - 12:39 PM
Pin, we all worry about losing our response, ever more so when we are decreasing our dosage, or stopping. Be encouraged by the fact that others have reached PCRU even while on a reduced dosage, and those that do lose PCRU during a stoppage, or a reduction, invariably regain PCRU. If you should lose PCRU during reduction, it isn't likely to be by much; as long as your PCR isn't increasing, test to test, you could be on 300mg and have a very low PCR reading .. not necessitating that you go back on full dosage and be subjected to the side-effects of the higher dosage ... worst case, it could be a tradeoff. When you have Gleevec 100mg pills, it is more convenient to slowly reduce your dosage, as the pills are easily split. Wishing you all the luck in the world. Fully expecting your onc to nix the now idea, but hoping he will commit to when.
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
Advanced Member
Posted 23 November 2016 - 12:07 AM
Hi all!
I'm still waiting for my test results to come back from Adelaide, it's been a bit of a debacle - long story, but hopefully now they have my sample and I'll find out soon....their testing equipment goes to 5.5 log (ours only goes to 4). Apparently, if my results from Adelaide are low enough (specifically what this is, I don't know - fingers crossed I am not detected), I can have a go at reducing. My goal would be 200mg, but I think I will probably have to start at 300mg.
I am excited to try - and a little hopeful that I will feel better if I reduce. I also wonder if I will notice a drop to 300mg. It's 25%, so it seems like a lot. I hope so.
Any insight or wisdom appreciated!
Ps. My back story is that I've been <0.01 (4 log) for several years now, my results had a wig out at 15 months where I was tested every month (the theory is this may have been due to some herbs clearing the gleevec out my system too quickly), but then stabilised again at two years, and stayed there ever since (I think I had one test come in at exactly 0.01, but the rest were <0.01).
baseline 38 3 months 12 6 months 0.14 9 months <0.01 12 months <0.01 15 months 0.013 18 months 0.01 21 months 0.026 24 months <0.01
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 23 November 2016 - 08:45 AM
I'm curious if any trials are being done for dosage reduction and if not, why? It seems like that would be the next best thing to the stop trials, dosage reduction, and it could cut costs for insurers.
Because medicine doesn't have a way to quantify and qualify that it works for some and not for others. They can't predict who it will work for and who it will not work for. People like to think there is some order to it all, that it follows a path. It doesn't. It's cancer, and it is about as random as it gets.
rct
Advanced Member
Posted 23 November 2016 - 08:57 AM
I won't say many, but certainly some of us, have had to lower our dosage due to side effects. Due to a pleural effusion my dose was lowered to 50 mg of Sprycel from 100 mg. That was in 2012. Because of the length of time I was off of anything waiting for the pleural effusion to resolve I almost lost CCyR. It took almost 15 months for me to get back down to MMR but I have floated in and out of undetected for almost 2 years now.
I don't understand why it's considered ok to lower dosage due to side effects but not ok to consider lowering dosages just to see if the person continues to respond at a lower dosage. In Trey's words "it doesn't make sense". In mine (and Spock's), "It's not logical."
I've had the conversation with my onc that I want to take as little of this drug as possible and still maintain MMR and he understands and agrees with that, especially considering the recent cardiac issues with Sprycel (and others).
Happy Thanksgiving to all who celebrate this holiday!
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
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