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100 mg sprycel


Hello, New here, have been on 100mg spryel for 2 yrs and a month. Last pcr test was undetectable. Doctor insists on keeping me on high dose. Feel like sprycel is high risk and could cause other problems. Can doctor refuse to lower dose?

I am "undetectable" for over 3 years and I take 20 mg sprycel every other day. Your doctor is working with outdated information.

My "20 mg" dose was prescribed by my doctor who is a research oncologist in the field and told me the lowest dose of sprycel which works is best. Feel free to mention this to your doctor.

I’m now on 50 mg and have been for about 6 months.  I would either push back on your Dr again or get another opinion.  I’ve consulted with 2 CML experts and neither refused to discuss lowering dose.  If you’re doing well, your Dr should be open to finding the lowest dose that works.  

Thanks, I agree. The 100mg is just draining me of all energy, hoping 50mg will change that.

100 mg is very high for most people. New protocols are suggesting 50 - 70mg starting dose. And this was known before 2018.

Dosage is set during clinical trials by noting toxicity and adverse events during pharmacokinetic testing. They are looking for maximum drug plasma levels (area under curve) which do not "kill" the patient sort of speak. That dose is not necessarily the most effective dose - although in many cases it often is the most effective following the idea "more is better". In the case of sprycel, however, they are learning (have learned) more is not better. There is a "sweet spot" below which dose is not as effective AND above which dose is not as effective (and often more toxic) either. In dasatinib, personalization is strongly urged so doctor and patient can find the most effective lowest dose which minimizes side effects. For many patients this will not be 100mg, but more likely 40 mg-50 mg. 

In my case, I was prescribed 20 mg because any higher and I would develop severe myelosuppression. And even though I still had a PCR > 50.0%, 20 mg destroyed my CML (along with immune enhancement) and my PCR plummeted to undetected. Dasatnib is a "threshold" drug.

My doctor is worried that I may develop a resistance to sprycel if I lower dose. I suppose its possible, but seems  unlikely. I am going to push for dose reduction to 50mg. Hope to be at 20mg some day. 

My boyfriend was on 100mg earlier this year & his platelet counts crashed & his  BCR-ABL went up to 0.15 (prev was 0.05 when he was on Nilotinib).

His doc reduced it to 70mg and his platelets have stabilised within range of 90s . 

Also, his BCR-ABL also went down from 0.15 to 0.08

The all-time side effects he has are pimples / red dots all over his body & he is on medications for this.