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Dose Reduction on Sprycel

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I was diagnosed in June 2021 and started on 100 mg of Sprycel.  Fortunately I had a very robust response, but suffered from fatigue, upset stomach, rashes, and headaches. Ultimately, I was able to convince my doctor to reduce my dosage to 50 mg.  He seemed willing, albeit reluctant.

I am non-detect and would very much like another dose reduction to 40 mg, and ultimately, if all goes well, to 20 mg.  My doctor is an CML specialist at a world-renowned cancer center.  He does not seem to be amenable to a dosage below 50 mg.

I am wondering why would there by any reluctance by any oncologist to reduce dosage?  Does anyone know what are the risks in seeing if a lower dosage works?  Can you just increase your dosage again if you lose non-detect on a lower dosage?  Wouldn’t a doctor want their patient to be on the lowest dosage that successfully controls their condition?  (I did ask my doctor these questions, but did not understand his response.)

Are there any articles or publications that support a dosage under 50 mg?  Short of switching doctors, does anyone have any advice?  Is it worth it to get a consult with another doctor?

Thank you.

Sage

Hi Sage,

I was treated on 20 mg dasatnib while still positive for CML, by Dr. Cortes (world expert in CML) and achieved non-detection status. I have since stopped all therapy one year ago and remained undetected. I test this weak to see if I still am undetected.

You are certainly a cadidate to reduce dose to 20 mg and test in 3 months to see if you status has changed. After 3-4 years of undetected at 20 mg, you can try what I did and stop taking a drug and see if you can hold remission (treatment free remission).

I do not know of any papers citing 20 mg dosing at this time. It is probably why your doctor does not support you lowering your dose. Of course, no doctor recommended lowering dose to 50 mg until there were papers documenting its efficacy. Leading researchers often are ahead of the publishing curve which is why I sought out Dr. Cortes. I am glad I did.

I feel your pain, but i’m afraid a dr will not recommend to do any change if the system works, and even though your feelings are valid, until there is something measurably wrong they will follow the protocol. Feeling fatigue is not measurable.

I went through some similar experience, felt so low energy it affected my work and family life. Really strong brain fog, inability to think clearly, and pretty strong arrhythmia (which was very measurable, yet only a 100mg to 50mg decrease was the result).

Daily rigorous exercise, complete abandonment of any (even trace!) source of caffeine, and most importantly copious amounts of potassium supplements put me back to a sustainable path. I also stopped taking other supplements and vitamins because they did mess my stomach up. Tumeric and mushroom extract and vitamin d and whatever crap you can name I took. It made things much worse. I suggest a strict elimination protocol, water only, your tki, and cooked chicken without any spices for a week. Start introducing food items and supplements one by one over the course of a month.