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Halving the TKI dose safe, cost effective in CML patients with stable remissions

dose reduction Destiny

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#1 TeddyB


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Posted 06 December 2016 - 06:55 AM

Some (uplifting) information from the Destiny trial.






I am considering asking my onc about lowering my dosage to 200mg gleevec pr day after around 6 years of full dosage (400mg), then maybe, just maybe come completely off after 4-5 years of half dose if numbers are on my side. I still have 1,5 years to think about starting half dose, but it does seem very tempting with all these uplifting study results coming out. My PCR has been hovering around 0,01 - 0,03 (IS), the last years, and then no detectable cml on my last test.


Some interesting outtakes from the article:


"After 12 months of half-dose therapy, molecular recurrence, defined as a loss of MR3 on two consecutive samples, was detected in 9 of 49 patients (18.4%) with MR3 but not MR4 remissions, compared with 3 of 125 patients (2.4%) with MR4 or better remissions"


From the Euroski study:


"As reported previously, patients who had been on a TKI for more than 5.8 years before attempting to stop had a lower rate of relapse (34.5%) than patients who had been on therapy for less than 5.8 years (57.4%). Each additional year of TKI therapy was associated with an approximately 16% better chance of successful TKI cessation."


Hope everyone is doing fine, and hope you have a great Christmas holiday :)

#2 AdamJ


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Posted 06 December 2016 - 09:14 AM

Thank you for sharing this article. It is exactly the kind of thing that many of us might be able to use to help convince our doctors to consider dosage reduction.

3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU

#3 kat73


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Posted 06 December 2016 - 12:34 PM

Yes, excellent ammo!  The question now becomes:  is living with an MMR level of CML going to cause trouble longterm?  I think my onc is super uncomfortable with the idea of leaving that much residual disease untreated.  Guess we'll need intrepid folks to stay at MMR for five or ten or even twenty years and tell us.   

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.

#4 TeddyB


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Posted 06 December 2016 - 06:46 PM

Personally i dont think i would not lower dosage if my pcr was around 0,1, but at 0,01 its getting more and more tempting, especially with the side effects. Halving dose should hopefully give me some relief.

#5 scuba


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Posted 06 December 2016 - 07:32 PM

I was 'forced' to lower my dose even when my PCR was around 50%! - I had no choice because Sprycel tanked my blood counts. What was surprising was that even at 20mg (1/5th so-called normal dose), my PCR continued to drop and accelerate to where it is now .... < 0.01% M.D. Anderson scale). Dr. Cortes told me that Sprycel (in particular) may be too high an initial dose at 100mg. He has had much success at 20mg with many patients.


Once MMR is achieved - patients have a lot of room to experiment with dose to maximize effectiveness with minimal side effects. It's sad that oncologists don't know this. Cutting dose and testing response is the right way to manage CML. So many patients suffer with debilitating side effects needlessly.


(full disclosure: My accelerated PCR drop did correspond to my adding Curcumin to my protocol ... sorry Trey).

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"

Also tagged with one or more of these keywords: dose reduction, Destiny

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