4 replies to this topic

[TeddyB]

Some (uplifting) information from the Destiny trial.

 

http://www.mdedge.co...patients-stable

 

http://www.mdedge.co...table-remission

 

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

[AdamJ]

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.

[kat73]

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.   

[TeddyB]

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.

[scuba]

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).