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3 Month Check Up

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#1 Chrissy_Z


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Posted 21 April 2016 - 12:15 PM

So I went in for my three month check up at I was at 12%. I had my blood work done at 10 weeks and my appt. was at 11 weeks. The Dr. was pretty confident that the overage is just a timing issue, but I am on the 6 week check up schedule now. I am bummed I missed the 10% but it wasn't by much. I have been feeling better just really tired, no more fainting episodes. Those were probably related to my info below. 

I wanted to share some general info below that I thought some of you might find interesting. I got a wrist watch style heart rate monitor that monitors resting heart rate in mid October for my birthday, so right before I started getting "sick". One of the things that prompted me to go in to the Dr. was that my friend pointed out that my resting HR was really high. I started Gleevec on Jan 14th and you can see the dramatic change in my resting HR. I never really paid attention to my HR but I sure am now. 



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#2 scuba


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Posted 21 April 2016 - 12:54 PM

Good catch on the resting heart rate. That is so important.


People should check their resting heart rate while still lying in bed in the morning. If it is over 80, it is a sign you have issues. Athletes have resting heart rates in the 40's and 50's. Non-athletes, but people who do regular exercise should have resting heart rates in the low to mid 60's. People who don't exercise typically are in the 70's.


In addition to heart rate - one should check their basal body temperature at the same time they check their morning heart rate. Ideally your morning temperature is around 98.2. Lower than 98.7 and that could be a sign of thyroid issues (hypo). Body temperature will follow a cycle during the day and is highest in late afternoon (98.9 ... 99.0 degrees). 


TKI's affect thyroid function. Thyroid testing is now done at M.D. Anderson as part of the 3-month PCR testing protocol.


(p.s. my resting heart rate is right around 60-65, basal body temperature is around 97.9-98.0 and will rise one degree during the day)

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"

#3 Buzzm1


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Posted 21 April 2016 - 01:13 PM

So I went in for my three month check up at I was at 12%. I had my blood work done at 10 weeks and my appt. was at 11 weeks.  I am bummed I missed the 10% 


Chrissy_Z, 3 months is 13 weeks, not 10 weeks ... please consider yourself as having reached the 10% goal ... 

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


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

#4 r06ue1


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Posted 22 April 2016 - 05:28 AM

Chrissy_Z, you are doing fine, just keep trending down is what is most important.  I also had heart issues after starting on Gleevec but my Oncologist told me it was anxiety related (due to an issue I had with an apple) and after I realized that and continued exercising, began to feel a lot better.  I was on metoprolol for a while but I haven't had to take it in months.  Just make sure you try to exercise, eat healthy and soon you'll be feeling better.  Did your Oncologist mention putting you on metoprolol?  If not, ask about it, worked wonders for me when I needed it.

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

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