Why won't my onc take this approach? I cannot understand this.
I have been asking for dose reduction for awhile.
The onc wants PCRU for a couple of years first, but the rest of my health feels like it's declining.
I am not on full dose but have been on 80 mg Sprycel and have been foray least 18 mos.
To me the SE are still disturbing at this dose.
My weight and my BP (150/87) are going up.
My shortness of breath is getting worse and now interrupting my sleep.
PCP ordered Chest x-Ray but that does not show PE or new anomaly.
Latest blood work maintains MMR - .034, although there's a slight increase from previous .031.
My next big labs and onc appt are early March.
What could I present to him that would make the most logical or
persuasive case for dose reduction?
Hi Deb -
There is no difference between your 0.034 current test and the previous 0.031 test - NONE. Forget the third decimal place. It's meaningless. At 0.03 you are doing very well. Almost a log below MMR. You can easily try dose reduction for one month and re-test.
You have a good chance at success.
Also - for weight gain and hypertension creeping up, it could very well be your Thyroid:
Sprycel affects the thyroid. Most complaints around here about fatigue, weight gain, etc. may very well be traced to underactive thyroid brought on by second generation TKI's. At M.D. Anderson, Thyroid tests are now routine because of this "discovery". Another reason to reduce dose and try cessation. You should have a free T3, free T4 and TSH hormone levels checked. TSH will be most informative. If it's high, your Thyroid is struggling.
Tell your oncologist that testing dose reduction incurs ZERO risk of progression for you. Studies show that even if your PCR climbs (and it would have to increase by a 1/2 - 1 log to be a significant increase), you can resume former dose and bring it right back down.
Below is a nice summary of the different TKI's (including Sprycel) you can share with your doctor:
Chance are he hasn't read it. They just stick to what they know which is often out of date.
For what it is worth, I am on 20mg Sprycel and below 0.01 PCR. I am considering a one month on, one month off strategy or a one day on, one day off strategy to continue my quest to wean myself off Sprycel.
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"