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TKI's linked to 'vascular' events


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#21 scuba

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Posted 14 February 2016 - 11:00 AM

Hmmmm questioned my Oncologist bout reducing dosage when I get low enough,  but his thinking is if you are handling the med and not having any major side effects then why mess with success.  Says maybe way down the road we can think of it if levels are holding.  But he is thinking a long time.  I am thinking why would I risk a relapse if things are going along well.  Sorta like poking a sleeping bear, you could get bit.....

 

More than 60% of patients who are "eligible" to stop taking their TKI and try cessation (i.e. two years PCRU) elect not to for the same reason you wrote above (M.D. Anderson, pers. comm.). It's human nature to avoid change if change can be avoided. Even when an expert (Oncologist) tells them it's o.k. to try - they tell the expert - no. Something else must force them to make the decision for them. 

 

The fact remains that no patient who was in MMR/CMR for  year or more who tried cessation progressed. None. The one patient who is often cited as progressing had a co-morbidity (very sick patient in other areas) and relapsed with a different disease - not even CML. 

 

Reducing dose to try and minimize side effects while at the same time monitoring your PCR for increase (monthly tests) is a very safe thing to do. Oncologists who are not expert researchers in the field will not tell you this until they are told that this is the new protocol and becomes part of the NCCN guidelines and they are "forced" to change.

 

During the most recent ASH conference,  a panel discussion on dosing, cessation and other related matters focused on the need for more customization and individualization in treatment. They discussed how one size does not fit all. Strange that doctors insist that full dose forever is the only way in light of all this new information. It's not their body or side effects. No risk in telling patients stay the course. 

 

Still - the patient - you - has to be comfortable with trying something different - especially when your doctor does not support your desire to try.


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"


#22 kat73

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Posted 14 February 2016 - 02:55 PM

TeddyB - I have used this quote before from Dr. Cortes - he said anything under .09 is fantastic and "indistinguishable from undetectable."  For you to get to MMR at 6 months was ahead of schedule, and to get to MR4 (.01) at 18 months was absolutely terrific.  At some institutions, the lab stops reporting right there - no more decimal points - so you've pretty much attained the Holy Grail and have maintained it for the requisite 2 years.  You certainly can make a case for a trial of cessation or dose reduction, it would seem to me.  I only hover between .1 and .01 and I'm six years out.  Gosh, if I were in your enviable shoes, I sure would ditch the Gleevec (with the agreement of the onc, of course) and take a try - who wants those Donald Trump eyes?


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.


#23 TeddyB

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Posted 14 February 2016 - 05:08 PM

TeddyB - I have used this quote before from Dr. Cortes - he said anything under .09 is fantastic and "indistinguishable from undetectable."  For you to get to MMR at 6 months was ahead of schedule, and to get to MR4 (.01) at 18 months was absolutely terrific.  At some institutions, the lab stops reporting right there - no more decimal points - so you've pretty much attained the Holy Grail and have maintained it for the requisite 2 years.  You certainly can make a case for a trial of cessation or dose reduction, it would seem to me.  I only hover between .1 and .01 and I'm six years out.  Gosh, if I were in your enviable shoes, I sure would ditch the Gleevec (with the agreement of the onc, of course) and take a try - who wants those Donald Trump eyes?

 

Thank you for those encouraging words.

I am changing oncs now, will be interesting to hear her thoughts on cessation/dose reduction.

Donald Trump eyes, that sounds like a new fashion trend, or not :)



#24 minu

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Posted 22 February 2016 - 01:59 PM

Scuba, taking your cue, I reduced my tasigna dose from 600 to 400mg. Prior to that I was mmr to undetectable for 9 months. I can't do the test every month. My next test is in March and keeping my fingers crossed. The last one was in Dec 15. Fortunately my onc agreed even with a 3 month gap between tests. Reducing the dose has definitely eased some of the the side effects. Minu

#25 scuba

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Posted 22 February 2016 - 02:12 PM

Scuba, taking your cue, I reduced my tasigna dose from 600 to 400mg. Prior to that I was mmr to undetectable for 9 months. I can't do the test every month. My next test is in March and keeping my fingers crossed. The last one was in Dec 15. Fortunately my onc agreed even with a 3 month gap between tests. Reducing the dose has definitely eased some of the the side effects. Minu

 

We're pulling for you, Minu!


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"


#26 Buzzm1

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Posted 22 February 2016 - 02:17 PM

Scuba, taking your cue, I reduced my tasigna dose from 600 to 400mg. Prior to that I was mmr to undetectable for 9 months. I can't do the test every month. My next test is in March and keeping my fingers crossed. The last one was in Dec 15. Fortunately my onc agreed even with a 3 month gap between tests. Reducing the dose has definitely eased some of the the side effects. Minu

Minu, what's your history? .. date of diagnosis, etc..  tia ... 


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.  

 

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