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#1 surfdaisy76

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Posted 12 January 2016 - 05:03 PM

Hello All,

Just had to share with people who would really understand what I was talking about!  Saw my onc on Thursday...it was my first 3-month appointment and I was a little anxious.  Kept thinking what if everything has gone wonky during that long of time??  But he had my labs and said I was undetectable!  Thanks to all of you, I was much more educated than the last time I saw him and had the right questions to ask and it's true!!!  He said I will just see him every three months and continue on the Sprycel.  So I had a great weekend!  But I think I made a mistake being cocky and mocking the side effects gods by talking about how good I have actually felt since Thanksgiving.  All of my nasty side effects roared back to life yesterday, thought I was gonna die (and actually thought it might have been easier!). 

Better today....so onward and upward!!! :mellow:



#2 Buzzm1

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Posted 12 January 2016 - 05:24 PM

Congrats surfdaisy!!  Here's to many more ... 


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 scuba

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Posted 12 January 2016 - 06:17 PM

Hello All,

Just had to share with people who would really understand what I was talking about!  Saw my onc on Thursday...it was my first 3-month appointment and I was a little anxious.  Kept thinking what if everything has gone wonky during that long of time??  But he had my labs and said I was undetectable!  Thanks to all of you, I was much more educated than the last time I saw him and had the right questions to ask and it's true!!!  He said I will just see him every three months and continue on the Sprycel.  So I had a great weekend!  But I think I made a mistake being cocky and mocking the side effects gods by talking about how good I have actually felt since Thanksgiving.  All of my nasty side effects roared back to life yesterday, thought I was gonna die (and actually thought it might have been easier!). 

Better today....so onward and upward!!! :mellow:

 

Let me see if I have this correct ... you were diagnosed 3 months ago and 3 months later you are "undetectable".... did I read that correctly?


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"


#4 Buzzm1

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Posted 12 January 2016 - 06:47 PM

Let me see if I have this correct ... you were diagnosed 3 months ago and 3 months later you are "undetectable".... did I read that correctly?

Questioned the same thing ... went back and did some research ... looked at surfdaisy's old posts ... surfdaisy was diagnosed in (early) June.

 

Obviously a very quick responder  .. seven months ....


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


#5 Dom

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Posted 12 January 2016 - 09:11 PM

I read it the same way. Even early June (of last year?) seems way to soon. Maybe the poster can fill us in. I hope it's true. 7 months to pcru! I'm pushing 2 years, and I'm not there.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#6 r06ue1

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Posted 13 January 2016 - 07:07 AM

Couldn't undetectable also mean CCyR or MMR?  I would ask your oncologist for the exact levels to get a clear understanding of where you are at.


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


#7 kat73

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Posted 13 January 2016 - 11:54 AM

I, too, found this astounding.  Hope it's correct, tho!  It's taken me 6+ years and I got an undetectable 6 months ago, but bounced out.


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.


#8 soundoff

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Posted 14 January 2016 - 12:29 AM

Congratulations

#9 Susan61

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Posted 19 January 2016 - 06:40 PM

Congratulations on your PCRU.  There are a lot of people doing very well on Sprycel, and that was a quick response that you got.

I have been on Gleevec since 2000, and I still get side effects to this day.  I just know that my TKI saved my life when there was nothing else available for me.  Your side effects should get better with time.  This is all so new to you, but keep up the good work.

It felt good to hear my Oncologist tell me that this was my 15th year of PCRU today.






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