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Another test. Not good news.


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#1 Dom

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Posted 14 August 2017 - 02:47 PM

As you can see in my signature, my numbers are up.  On the good side, it is not up by much, just a climb from 0.05 to 0.10.  

 

But on the bad side, I really don't have any place to go.  I'm already on imatinib 600, and the other stuff (sprycel, etc) have cardio effects, and I have BP and heart issues.

 

My oncologist decided that the number might be a fluke, which to me means he is being very cautious, so he wants another test at the end of August.  He says he has seen numbers sit at PCRU for years, and then suddenly jump to 2.0, but a quick second test shows it is still PCRU.  I guess I don't know how that happens, but it does.  We'll see.  Right now, I keep thinking "This happened before just a few months ago, my luck might have run out."  


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


#2 Buzzm1

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Posted 14 August 2017 - 03:15 PM

Dom, be heartened by the fact that since you started Imatinib 600mg, your overall trend is down.

 

When you test again in three months there is a very good chance that it will be down.

 

IMOO, to test again at the end of August would be a waste.


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

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#3 gerry

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Posted 14 August 2017 - 05:03 PM

Hi Dom, doc is right, things can go wrong in the testing process, so it is the trend that matters. Another test is a good idea and fingers crossed your PCR will be down again. :-)

#4 thatguy

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Posted 14 August 2017 - 08:52 PM

Check my signature... Per M. Deininger appt 2 weeks ago he stated pcr results aren't as accurate at low levels (such as yours). Don't worry yet.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#5 Jan0080

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Posted 14 August 2017 - 11:31 PM

A lot of us are very pro-active medically. Very few of us really understand all of the nuances of CML and some of the weird things that can happen. When push comes to shove ask your Doctor. If you are unsure of his opinions talk to another Doctor.
Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!

Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.

#6 Trey

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Posted 15 August 2017 - 01:53 PM

Last three are statistically insignificant in difference, plus .1% is MMR.  Nothing to cause concern.  In a plateau, which is not unusual for TKI drugs.



#7 tazdad08

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Posted 15 August 2017 - 05:05 PM

We are easily scared or concerned when we have this disease. I admire Treys knowledge and opinions on a daily basis. Most of time Trey can give better explanations and opinions than lots of the cml Dr's. And he backs his opinions with evidence of why he came to that opinion. So, I side with Trey and say to try and stay positive. You have good results and we flutuate from time to time.

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!


#8 Dom

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Posted 15 August 2017 - 06:13 PM

Thanks to everyone. I think you're all right. Instead of thinking my numbers went up, I should assume it just plateaued in a safe range.

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


#9 jmoorhou

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Posted 16 August 2017 - 08:53 PM

Dom, you're from NJ, I grew up there. Have you checked to see if there is a CML specialist in your area. I live in CA now and there is one at UCSF, which is a teaching hospital. They have MDs and advanced degrees in CML. The one I email is Neil Shah at Neil.Shah@ucsf.edu, he answers his email and may be able to recommend someone in your area.
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#10 Dom

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Posted 19 August 2017 - 12:57 PM

Hi jmoorhou.  The one I see, at MD Anderson tells me he is a specialist in CML, at least in the sense that he has seen a great many people with the disease.  


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


#11 carrie

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Posted 19 August 2017 - 09:41 PM

Dom, Look at my signature....on Gleevec for 10 years. My numbers were up and down constantly. Finally at the end they started going up more and more so I had to switch to Tasigna. I preferred the side effects on Gleevec so much better than Tasigna. I was able to stay on Gleevec for awhile and I am thankful for that 10 years.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#12 Dom

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Posted 09 September 2017 - 11:41 AM

Well, everyone was right, and I was wrong.  Look at my new signature.  I guess, like Trey and Buzz said, I've plateaued in a safe range.  I'm so happy, and this time I will stay happy ... until my next blood test, then I"ll worry all over again. 


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


#13 gerry

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Posted 09 September 2017 - 04:05 PM

Nothing wrong with being concerned about your health, you have to be your own advocate. :-)
Glad it has turned out okay.




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