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Confused about next steps.. dose increase Sprycel

Hi everyone,

I was diagnosed November 2019 and initially given 100mg Sprycel but suffered immunosuppression and had several breaks and ultimately dose reduction to 50mg.  I see Dr. Mauro at MSK and do really like him, BUT I’m concerned about next steps after my latest PCR came back showing a bit of a plateau. I’m officially at 18 months of treatment, but I did have several months off meds in the beginning.  My last three PCR results are as follows.  

.8 November 2020 (one year)

.28 February 2021

.23 May 2021


Today Dr Mauro suggested that I try 70mg for a bit to try and get me in that “safe harbor” of below .1.  He was zero pressure but wanted to be conservative.  My issue with trying this increase is that I’m living with immunosuppression already.  My WBC has not been above 1.5 in over a year.... neutrophils hover around .8.  His theory seems to be that these counts will be stable but remain low.  If we get to MMR we can then go lower on Sprycel.  He does not want to reduce dose until we get into MMR.  

My fear is that I’ll become more immunosuppressed and this could negatively impact my PCR results.  On the other hand, Dr Mauro is an expert and genuinely wants to get me into deeper response.  I’m a bit surprised as I expected him to suggest we wait until another PCR result in 3 months to make any changes.   I’m very confused.  




I was also started on 100mg Sprycel but did not have the result that most do on Sprycel.  I switched to Nilotinib and am currently in MMR and have been for over a year.  I am on a little plateau as well but the latest NCCN guidelines say anything below 1.0 is "target met".  I read this as there are people that stay in CCyR and have same survival outcomes as those that get deeper responses.  I want a deeper response obviously, and think it will happen, but we are all different.  More and more I think really deep MMR is most useful for TFR.  

I hope you see a further drop in your next lab but if not Nilotinib may be a good option for you.

Thank you.  I’ve been really stubborn about changing from 50mg Sprycel because other than the immunosuppression I really tolerate it well.  I’m able to work and function as if I was not on medication.  Maybe it’s time to try something new if the 70mg doesn’t budge my numbers.  I was just expecting my doctor to say “hold the line. You will get there in time...” etc.  Just surprised that he suggested higher dose, as if there was cause for concern, or maybe I’m really reading into it.  You’re right though... my main concern is living to see my daughters grow and stressing about the numbers isn’t helping. 

I am surprised he is suggesting raising your dose. You are very close to MMR. Ironically - lowering my dose to 20 mg INCREASED my response. It's not intuitive as we are all taught more drug = more response. This is not true in sprycel's case (and other threshold drugs). It is because of immuno-suppression that you may be plateauing. Lower dose may actually bring a better response. But most doctors don't understand pharmacokinetics and that response is not necessarily linearly correlated to dose.

I was severely immuno-suppressed and on 70 mg I had some response. But on 20 mg, my response skyrocketed. I know - it's counterintuitive. Now I take no drug and remain undetected. Fingers crossed.

Given your level, you could try 20 mg and work up as needed. I have a suspicion, however, you are likely to respond quite well, have less immunosuppression and a better outcome. As long as you have zero blast cells, you have time to try this approach. But your doctor needs to agree with you to try. Just ask him, "maybe less dose will give me a better response since I am so sensitive (immunosuppression) to sprycel".



Thank you, Scuba.  I was also really surprised!  I asked about reducing the dose instead and he was not receptive.  He did say he will reduce in the future.... I’m assuming meaning after deeper response or longer duration.  I’m going to bring it up again though because I just don’t see how I can function on 70mg, and I’m clearly sensitive to Sprycel.  I’m going to push back a bit.  My fear is that 70 will be worse for suppression and not help response.  I also agree that lowering cannot hurt in the short term.  

I am also a slow responder and see Dr. Shah (a CML specialist) at UCSF.  I am barely in MMR (.09%).  In three months I will have taken Sprycel 100mg for two years.  Dr. Shah said repeatedly that being under 1% is good and it is not necessary to reach MMR.  It is not easy being a slow responders because I feel like the initial diagnosis anxiety lingers around.  I am completely happy with my level now and put my hope on future research which will hopefully help us all eventually go TFR.  With such low WBC, I would not increase dose.  You are ok at your level but I understand the desire for better numbers.


Wow, Tater, you are so lucky to be going to one of the world's leading lights in CML research - for God's sake, trust anything he says!  You are in such an early phase of this fight - 18 months! - in about 5 years from now, when you are happily ensconced at 0.002, you will look back on these days of worry and ruefully chuckle.  Also, where in the world did you get the idea that you are so severely immunocompromised?  I have been repeatedly told that my numbers (like yours) are nothing to worry about at all and CML patients treated successfully with TKIs do not have compromised immunity.  We have more to our immune system than is counted in those tests.  There is something to what Scuba said about the lower dose yielding better PCRs - I got big drops each time when I came back on treatment after being off for pleural effusions - but please don't draw a line in the sand with Dr. Mauro on this!  He is absolutely protecting you by insisting on a steady MMR before a reduction in dose.  If you have an uptick in side effects at 70 mg, tell him, and I'm sure he'll let you go back to 50 mg.  And then . . . patience!

Hi Heidi,

Thanks for this!  You nailed it exactly.  It’s hard to be a slow responder because of that initial anxiety lingering.  It’s just hard, period, and I’m working on being patient and grateful.  

Thank you again!



Hi kat73,

I love Dr. Mauro and his team and am so grateful to him for many reasons.  He is collaborative and supportive while also being honest and transparent.  There was no pressure and he did repeatedly state that we can go back down in dose if I decided I was more comfortable at 50.  My hope is lower, lower PCR and lower dose.... 

My issue is lack of patience, fear of side effects and not being able to work or take care of my family.  But I also worry about not responding deeply enough to be around.  Lots of worry!  

Thank you so much for your response.  It’s very helpful.  


Hey CG.... May I ask what side effects have you experienced taking nilotinib