PCR results .03 to .33

Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
0-27 Months Rx: Sprycel 100mg
Current Rx: Sprycel 50mg

0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.05%
24 Month PCR = 0.04%
27 Month PCR = 0.01%
28 Month PCR = 0.04% (after decreasing dose to 50mg)
29 Month PCR = 0.03%
32 Month PCR = 0.33% (very scared )

I would wager that the 0.33 reading is an error - probably lab reporting error. The fact your previous result was 0.03 suggests a decimal place mistake or they mixed up another persons result with yours.

Definitely get retested and that will be definitive. Also - when your new test comes back even lower than the last correct test, you should delete this current result (that's how confident I am it is an error). It should never show up in your history.

I would not change anything (stay on your current reduced dose) until after the re-test. You have plenty of time. You are going to be fine. I hate when labs do this.

Take a look at what they are learning about Sprycel:

https://learningcenter.ehaweb.org/eha/2018/stockholm/216328/jangik.lee.t...

Lower dose, it seems, contrary to intuition may actually be MORE effective than the original starting dose. I am fairly certain the lab screwed up (could even be another persons results!!). After the re-test, let us know. I bet you are just fine.

(I started at 20 mg Sprycel when my PCR was 55.0%. My PCR plummeted on this dose. I am PCRU today)

Thanks for your reply, I go back Tuesday for repeat PCR and BMB. In your opinion if my PCR is really around .3 could this just be from my dose reduction and going back to 100 works get me back under .1?

In my opinion your reduction to 50 mg had nothing to do with it. Did you note the article I linked ..... there is evidence that 100 mg leads to a worse outcome than 50 mg. Dr. Cortes at M.D. Anderson prescribes 50 mg starting dose. In my case, he started me at 20 mg.

Your "0.3" reading is erroneous. It is not real. No way you would lose 1 log response at half dose in such a short time. You would not lose 1 log response even if you stopped taking a TKI all together (at your 0.03 level). CML is a SLOW disease when in the chronic phase. Many women can now start a pregnancy and get through nine months without a TKI while their PCR slowly rises (new protocol).

I know this is nerve wracking and scary. But know that others have gone through this and have had erroneous results. It is unfortunately too common. The lab techs are swamped. Error is easier than we think. It will be corrected at next test. And you will be lower than you were before and on 50 mg.

John, I hope it useful for me to add to what others have said that this result is suspect at best, and not worth worrying about until re-confirmed. As Scuba has pointed out if you had stopped taking any TKI the loss of 1 log between your last two tests would still be highly unlikely. As I have said in the new thread I just started most of us old timers (12 years just past for me) have had blips in results at some point - and we are all still here - and the majority are still on our original medication. 

Got some great news today (finally) just 17 days back on 100mg and my PCR results are .19%. Apparently for one reason or another I still need 100mg Sprycel  to control my CML. Based on my research it could be my bodies ability to absorb it or it could be my disease biology. Either way I could not be happier. It seems very rare that people do not continue to maintain MMR after a Sprycel dose reduction, I actually could not find a single case of it happening which scared the living sh** out of me thinking something much worse was going on. I hope my experience might help someone in the future if they come across it when they are in a similar situation. I hope it doesn't scare anyone from trying a dose reduction as I am certainly a very rare case. I will try dose reduction again in the future but will wait till I am .00X for some time.

After another 30 days back on 100mg and another PCR which now shows .09, continuing downward, I could not be happier. Looks like my does reduction was most certainly the culprit of my 10 fold PCR increase confirmed by 60 days back on 100mg with 2 PCR tests showing a solid trend back down. On 50mg I slowly then eventually more quickly trended up. Guess I will be stuck in the 100mg club for a while.

Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
Current Rx: Sprycel 100mg

0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.05%
24 Month PCR = 0.04%
27 Month PCR = 0.01% (started dose reduction to 50mg)
28 Month PCR = 0.04% (after decreasing dose to 50mg)
29 Month PCR = 0.03%
32 Month PCR = 0.33% (started dose back to 100mg)
33 Month PCR = 0.19% (after increasing does back to 100mg)
34 Month PCR = 0.09%

It does seem 100 mg is your threshold necessary to trend CML downward below MMR (which you have regained).

Hopefully you will get to try reduction again. A working theory is that CML stem cells burn themselves out over time. In order for the disease to re-start following cessation, for example, CML stem cells have to come out of quiescence and divide. Without TKI around - they re-start the disease. Perhaps you need a few more years of Sprycel to knock this population down.

(Another way to speed this up may be fasting (at least 3 days at a time) which upon re-feeding rejuvenates the immune system:

https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-da...)

John - Do you recall if you ever experienced myelosuppression when you started Sprycel at 100 mg?

I ask because there is data suggesting that those who experience myelosuppression (in my case it was severe), require much lower dose of Sprycel as their "threshold" level.

Glad you are back on track John! 

Paul started back on 70 mg last night. He was already experiencing myelosuppression on 50mg, so I am going to be anxious to see how it goes.