Every Other Day Dosing vs Daily Sprycel

Hi scuba,

I was really surprised about the every other day idea at this point.  I won’t even have a PCR test until late February at least.     I am really pushing my Dr for 20mg and frequent checks and so far she is amendable but not convinced. We will talk about it again after next CBC next week.     I’m working on it :) and brought up your point about not being on ANYTHING now so why not 20mg and keeping close watch?   I also stressed with her the mental toll not being on anything is taking on me.... In the meantime I will see Dr Mauro for a second opinion. 

I really like my Dr but she is being more conservative and prefers starting higher (50) then moving to lower doses after PCR shows efficacy and only if side effects call for lower dose.  I’m happy that lower dose is her solution before switching.  For some reason I’m probably more invested in Sprycel than I should be and don’t want to move on to other TKIs until I’ve exhausted this one.  Is that silly thinking?  

Tell your doctor that Dr. Jorge Cortes, one of the top 4 or 5 specialists in CML research and now is the director of the Georgia cancer center (U.S.) is the one who prescribed 20 mg to me and told me that since I had strong myelosuppression, that starting low and working up (if needed) is the way to proceed. That should give your doctor some measure of confidence. I did not come up with 20 mg on my own. I was guided by an expert. I am sharing what I have learned and experienced with you. Share what you have now learned with your doctor.

All she needs to do is monitor you! There's no mystery here. You should be having weekly CBC blood tests (to track blood counts) and monthly PCR checks to verify response. When you start 20 mg dose, within a week you will know if myelosuppression is still an issue. If it is, you stop and monitor blood counts. Then re-start again when blood counts recover and monitor. You may have to do this two or three times, maybe more, hopefully, no more. But once you stabilize (i.e. neutrophils or platelets stay above critical, but may be below normal), you will continue taking your low dose. Then in one months time, you test PCR (or FISH depending) and compare to previous level. If PCR dropped - you should dance and have wine and celebrate. You have arrived. Then you continue 20 mg as YOUR personal treatment dose. This is what happened for me - so it's possible eh?

Now then - if your PCR doesn't drop or instead rises, you can move to a higher dose at 40 mg. You may experience myelosuppression again, but likely not as severe (remember, your normal blood system is continuing to recover while your leukemic system is getting strangled and can't compete). And if myelosuppression is severe enough to stop therapy, restart back at 20 mg. Your priority goal is to get your normal blood system adapted first while continuing to have some dasatnib in your system. As long as PCR is stable during this phase you are good. And if on 40 mg you test and no severe myelosuppression and PCR in one month's time is trending down, 40 mg is your dose. I doubt it will be higher - maybe 50 mg, but not likely any higher than that. 100 mg is out of the question - that's toxic for your personal situation (toxic = myelosuppression and related).

This is not rocket science. I wish doctors worked with their patients based on what is now known about CML. You are likely learning more about CML in your particular case than your doctor knows. Think about that. All she has to do is work with your personal situation. We KNOW CML is slow in chronic phase - this is why the new standard for pregnant CML patients is to stop therapy and tolerate PCR rising while the pregnancy is taken to term. There is NO case I know of where a pregnant women stopped therapy in order to have her child, did not successfully resume treatment post pregnancy). That's NINE MONTHS. So, tell your doctor, imagine you are pregnant - what would she do? You know the answer. You have nine months to get your dose right. I have a strong suspicion you are going to do great on 20 mg.

Note: if your doctor tells you she is concerned about "resistance" developing at such a low dose, get a new doctor. CML is not a bacteria or viral infection.

Interesting ... I did have myelosuppression on 20 mg, but not for long. It took a couple of cycles and I adapted. I continue to this day to have myelosuppression, but mild. My neutrophils and platelets are normal, but my red blood cells are borderline and always have been since I stabilized. You will find you will likely have a new "normal" for you and that's o.k.

Your doctor is just delaying the decision. You should go to 20 mg. and get stable first. Then work up the dose if response is not ideal. I have a strong suspicion that you will do very well on 20 mg. You may have to cycle (on drug/ off drug) a few times, maybe once, but that should do it. Just be patient, you are going to get there.

There is data/evidence suggesting those who suffer deep myelosuppression from spyrcel, often have the deepest response to it in terms of CML. Same for those who suffer pleural effusion. The positive correlation is very strong and part of the reason my doctor wanted me to keep at it. Spyrcel may very well be the perfect TKI for you.

I have been on 20 mg sprycel for years now, 3 of which are "undetected". Later this spring or summer I will be going off sprycel altogether to test remission. I have high hopes. Right now, I am taking 20 my sprycel every other day - only to adjust withdrawal. I will be taking it every third day and then finally off it altogether. You have an "undetected" future ahead of you. Just support your immune system with to give your body all the tools to fight CML naturally as well.