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Cessation article with interesting perspectives and DMR defined


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#1 rcase13

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Posted 18 February 2016 - 10:07 AM

Found this article that pretty much covers what we already know. But it had interesting followup perspectives by CML doctors. The first perspective is actually my doctor and pretty much follows what he has told me in the past. He believes cessation should only be in clinical trials. But his T-Cell opinions are very interesting. I wonder if they look at T-Cells in any of the cessation trials? It would be interesting to know if the patients that relapsed had low T-Cells.

 

The second perspective is what interested me because they actually define what Deep Molecular Response (DMR) is. They consider 0.0069% (IS) or less to be DMR. Which is frustrating for me as I have been at 0.01% or 0.02% for a year now. I just can't seem to get lower. But it is even more frustrating because my lab won't report on anything less than 0,01% unless it is undetected. The one jump I had to 0.02% in my opinion means it is unlikely I am less than 0.01%. I understand why they won't report less than 0.01% but as a patient it just frustrates me.

 

http://www.healio.co...tinue-dasatinib

 

 

 

 


10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#2 Buzzm1

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Posted 18 February 2016 - 10:26 AM

Dasatinib Discontinuation trial http://bit.ly/1liFp8M November 9, 2015

from an initial 63 with confirmed deep molecular response for at least 1 year
after 6 months, 31 (49%) treatment free
after 20 months, 30 (47.6%) still treatment free
 
quick summaries of some of the STOP studies: http://bit.ly/1XyGyL5
 
rcase13, what is your history and are you still on full dose?

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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#3 kat73

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Posted 18 February 2016 - 11:49 AM

rcase - Thanks for the article with perspectives - very interesting indeed.  That definition of DMR is the strictest I've seen, sad to say.  I'll be having my Big Discussion with my onc on Monday.  I have a pretty good idea I'm gonna lose.  I feel like I'm never going to get to DMR (CMR) and therefore never get to TFR.  There's nothing for it but to wait, wait, wait, and wait for the studies - years and years and years of feeling this way.  Oh well.  Pick up the burden and go on.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#4 rcase13

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Posted 18 February 2016 - 04:17 PM

Buzz this is my history

 

10/1/2014  100%   Diagnosis

01/2/2015  0.06%  Tasigna 600mg

04/8/2015  0.01%  Tasigna 600mg

07/1/2015  0.01%  Tasigna 600mg

10/5/2015  0.02%  Tasigna 600mg

01/4/2016  0.01%  Tasigna 600mg

 

I know the 0.02% was nothing to be worried about but I have to say it scared the hell out of me!


10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#5 Melanie

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Posted 18 February 2016 - 05:09 PM

"The second perspective is what interested me because they actually define what Deep Molecular Response (DMR) is. They consider 0.0069% (IS) or less to be DMR. Which is frustrating for me as I have been at 0.01% or 0.02% for a year now. I just can't seem to get lower. But it is even more frustrating because my lab won't report on anything less than 0,01% unless it is undetected. The one jump I had to 0.02% in my opinion means it is unlikely I am less than 0.01%. I understand why they won't report less than 0.01% but as a patient it just frustrates me."

 

If your lab won't report anything past the 0.01 decimal, then you could easily be 0.0069 or less and they just keep rounding up, which would put you at 0.01%. You're on your way!


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#6 rcase13

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Posted 18 February 2016 - 09:39 PM

LOL thanks, but you have mistaken me for a glass half full kind of guy! My glass has a hole in it! I think only the worst. Especially since I got CML.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#7 gerry

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Posted 18 February 2016 - 10:37 PM

The other thing that can happen is they change equipment or labs. My doc had a number of patients suddenly become detectable after being PCRU when they changed who was doing the tests.

#8 Trey

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Posted 18 February 2016 - 10:41 PM

RC,

Glass-hole.


Edited by Trey, 18 February 2016 - 10:41 PM.


#9 pammartin

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Posted 19 February 2016 - 09:01 PM

Gerry has an excellent point.  I was surprised over the last 4 years my results did not change somewhat.  I have been tested at Cleveland Clinic, West Penn, & Hanhe Cancer Center.  All three used different labs and the local one, Hanhe involved a free testing grant from a lab who was looking to up their certification while offering patients a period of free PCR tests. 

 

Many who have had a lab change also had changes, albeit the majority minimal, in their results.  I always asked at Hanhe where the test was going because it often varied depending on their partners, grants, and current affiliations. 






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