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Loss of PCRU after years


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#21 Buzzm1

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Posted 08 April 2016 - 11:50 AM

I decided to resume my 20mg sprycel to test that indeed my PCR would drop back.

 

And It did - quickly.

 

After just two months, my levels went below 0.01% again where it remains currently. I will try cessation again - but probably one month on and one month off. Or maybe just not take the drug during the summer so I can tan better. I feel I can go months without TKI before a measurable increase occurs.

After we have our CML under control (either PCRU for a year, or at a very low level for an extended period of time) IMO we owe it to ourselves to see how low of a dosage it takes to maintain that level, if not ceasing TKI dosage completely, remembering that we can always increase our dosage if, and when, it becomes necessary.  The longterm effects of TKI's aren't yet completely known.  The less TKI we have to take the better off we are likely to be in the long run.  This especially applies to older people, such as myself, but it does apply to anyone on a TKI.  It's an opportunity to lessen longterm effects.

 

First, lowering dosage, a little at a time, a month before the next PCR, to see if it changes anything, is a suggestion.  Only do what you are comfortable with.  That could be 100mg one day, and 50mg the next, alternating dosage.


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


#22 missjoy

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Posted 08 April 2016 - 02:15 PM

missjoy, ideally all labs would test and report PCR BCR-ABL to MR5 I.S. .001; it then would require a two log increase to lose MMR ( defined as relapse); 
if you had a very low PCR reading for a long enough time, the odds of successfully stopping TKI could be in your favor.
 
Scuba has tried it, beginning with an MD Anderson PCR reading of .01,  which they allege to be equivalent to I.S. .003
(MD Anderson has their own scale)


Hi Buzzm1,

Thank you! I don't understand why MD Anderson pcr reading 0.01 (%?)equals IS 0.003(%?) Could you explain it?

PCRU means less than number x, so it is not detectable below x. Is PCRU less than 0.0001 or 0.001%?

#23 missjoy

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Posted 08 April 2016 - 02:30 PM

My levels were less than 0.01 (M.D. Anderson scale) and I remained below this level for six months (two testing cycles) before attempting cessation. I was able to stay off Sprycel (20mg) for nine months before re-starting. Although I didn't have to restart, the fact my PCR went above 0.01 and went as high as 0.08 suggested to me that CML was slowly growing back although not in a straight line increase. I maintained zero blasts during this time (see vitamin D thread) which led my oncologist to suggest I keep going (i.e. with cessation) to see if my levels would drop back naturally (indicating a renewed immune response). I was still below the MMR threshold (0.28 M.D. Anderson scale). But, I decided to resume my 20mg sprycel to test that indeed my PCR would drop back.
 
And It did - quickly.
 
After just two months, my levels went below 0.01% again where it remains currently. I will try cessation again - but probably one month on and one month off. Or maybe just not take the drug during the summer so I can tan better. I feel I can go months without TKI before a measurable increase occurs.
 
I have a theory that continued TKI use suppresses the blood making system (including stem cells) - more for some patients than others, but definitely suppresses mine. When stopping a TKI, perhaps more leukemic stem cells come out of hibernation and begin to divide re-populate the CML cell line - then by re-starting my TKI they (dividing LSC's) get nailed. Maybe this can accelerate the LSC depletion? Just a wild guess on my part, but seems reasonable. Any way, a day without a TKI is a great day. I was intrigued how quickly my PCR dropped back below 0.01% after re-start on my low dose Sprycel.


Hi Scuba
Your theory makes sense. Hope you are right. You have the spirit of a pioneer. You also take curcumin.Do you mind if I ask what brand,what quantity and what time you take it?

How come MD Anderson scale 0.01 equals IS 0.003%? I didn't get it. Do you know?

Thanks

#24 scuba

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Posted 08 April 2016 - 02:43 PM

Hi MissJoy,

 

M.D. Anderson scale reports a higher bcr-abl/abl ratio than International Scale. In calibration tests, the scales roughly correlate to 1:0.35 ... that is a reading of 1.0% M.D.Anderson scale is equivalent to a reading of 0.35% International Scale.

 

So 0.01 M.D. Anderson scale is roughly the same as 0.003 IS ... and since the third decimal place is beyond the precision of the test - anything less than 0.01 in either scale is so low and within the noise of the test that whether one is "undetected" or not is unknown. 

 

I'll PM you on what Curcumin I take - but II take it throughout the day 2 grams at a time with or without food depending. Eight grams is ideal, but I often take less now (six grams). 


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"


#25 rcase13

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Posted 08 April 2016 - 02:49 PM

The problem I have with taking the Curcumin is the expense. Everything is so expensive anymore.


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!


#26 scuba

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Posted 08 April 2016 - 02:59 PM

I agree on the expense ... I rationalize it as "food" and factor it into our food budget.

Truth be told, I eliminated all of the other expense on vitamins we use to buy. Just a few key ones that one can't get from food easily anymore (i.e. Magnesium, K2, D3,). We also eliminated ice cream and boxed stuff, so that freed up some dollars for Curcumin.

 

Assuming cessation success that will free up some more money. 


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"


#27 rcase13

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Posted 08 April 2016 - 10:42 PM

True, cessation certainly frees up some money...

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!


#28 Buzzm1

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Posted 09 April 2016 - 10:25 AM

MissJoy, what is your CML history/current status?

 

CML Leukemia lab tests for PCR BCR-ABL

 

CML Leukemia definition of CMR


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


#29 Buzzm1

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Posted 09 April 2016 - 02:57 PM

Any way, a day without a TKI is a great day. 

In 9 days I'll reduce down to just 50mg/day, taken as 100mg every other day.  To say I am looking forward to the "off days" would be a major understatement; I've been looking forward to this for a long time.  It will only be bettered when I cease TKI dosage entirely in October.  Still, I am angry at myself for having waited so long before beginning to reduce my TKI dosage.


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


#30 scuba

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Posted 09 April 2016 - 03:17 PM

Buzz ... don't beat yourself up over making this decision. It takes a lot of time and understanding and tolerance for risk before one can make decisions away from doctors. You're in a good place.


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"


#31 tazdad08

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Posted 12 April 2016 - 03:35 PM

I lost pcru after 3 1/2 years... It felt like a train hit me. I wasnt upset when I was diagnosed, but the phone call saying I was detectable again hit hard. I had self medicated at 20% of my dose for 3 years. I went back to full dose for 3 months and was undetectable at the next follow up. I have since went to 50% dose and still undetectable. That was 9-10 months ago.   


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#32 gerry

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Posted 12 April 2016 - 04:52 PM

I know another CMLer who was on 200mg Gleevec - she had been PCRU for a few years. When we talked about me stopping, she decided to try coming off before me, the CML returned. She went back to 200mg Gleevec and returned to PCRU. 200mg makes her side effects bearable and keeps the CML in check. I had thought she might succeed due to the low dose and duration of her PCRU. You just can't tell.




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