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Inquiry about Tasigna reduction

Hey y'all. I'm new here and am very grateful to have found this forum. Quick background: diagnosed March 2016 and started Tasigna 300mg twice daily and currently on the same dose. Last BCR-ABL was 0.008% and will have another test this month. Can anyone taking Tasigna tell me how low their remission results had to be and for how long before they were able to reduce their dose?

Hi Alaina, 

So, the jury is still out on this one. Some clinical trials (such as DESTINY) are suggesting that 5 years of good results gives a much better chance to stop taking your drugs and successfully stay off them. Others are saying 7. 

But as far as I'm aware, DESTINY is the only one which looked at side reduction too, but that was in the context of eventually stopping. 

Different drugs do different things at different strengths. Ponatinib is way too strong at full dose, so a reduced dose is given usually. It might be that dasatinib could be just as effective on a lower dose. But perhaps the people at Novartis got it right as you tend to see less aggressive dose reduction in patients taking their drugs (imatinib and nilotinib). All the same, you will find people taking 150mg twice a day and I have also heard of at least one person taking 300mg once a day. 

For those people, it's not clear to me what their goals are. Side effect management, or reducing before attempting stopping. 

David

Hi and welcome,

I am assuming that you are based and treated in the US and therefore would like to 'at least' reduce your dose of nilotinib to

  1. reduce healthcare costs 
  2. lessen side effects - as evident on lower doses of all TKIs
  3. ultimately try to achieve treatment free remission (TFR)                                                                                                                                                                                          

As David says, the UK DESTINY trial was the only 'stopping' trial with a dose reduction element in the protocol. Therefore the results highlight the issues of over-treatment and cost - for both individual patients and their governments.

Although a small % of the DESTINY study patients from both cohorts ('MMR- but not MR4' and 'MR4 or lower') failed to hold their molecular response (MR) during the dose reduction phase, these were a minority of the total enrolled and all regained their previous MR within 4 months of restarting therapy at their original dose.

If your PCR results have shown a stable and durable MMR over the last 2 years - 0.008% qualifies as a deep molecular response (DMR) - de-escalation to 50% nilotinib may well be possible for you. 

If your ultimate aim is to achieve TFR, this may also be possible but, as David has said, the current consensus for success seems to be 5-7 years on treatment and showing a stable MMR/MR3 or lower before trying for TFR.

As long as your doctor is willing to frequently monitor your Bcr-Abl1 % levels during a trial of de-escalation, you might want to discuss both this with him/her.

Hope this is helpful,

Sandy

Thank you so much for responding. Honestly, I am terrified of getting off of medication completely. My personal goal has always been to someday be reduced to half the dose for the simple reasons of feeling better & cost. I never knew that was a possibility until I found this forum. You guys are a well of knowledge.

Thank you, Sandy! Yes, I am in the US. My goals are to have a better quality of life and reduce cost; I truly believe if half the current dose can keep me in "DMR" (learned a new acronym), I would be the happiest girl in my state. Thank you VERY much for the explanation. I will discuss this with my oncologist.

Hi Alaina:

I was Dx Sept 2016 and started on 300 MG 2x/day Tasigna.  Had numerous side effects and convinced my doc to allow me to reduce dose to 450 mg/day 2 months after I hit MMR (0.1%) which was 5 months into treatment.  This first dose reduction helped on one of the side effects but others persisted, so we did 2 more reductions to 300 mg/day then to 150 mg/day over the next few months.  I have been on 150 mg/day for over a year now and my PCR has been at <.003% for 15+ months.  Side effects are nearly gone, certainly much milder and transient now.  QOL is much much better.  

Your current status certainly qualifies you for starting to reduce dose, but go well armed to your onc for this discussion.  Use my story and the DESTINY study for sure.  I did have to get tested more often during my reductions (every 6 weeks) but it was well worth it.  Good luck

WOW! This is certainly encouraging! Thank you very much for sharing your experience. What was your initial BCR-ABL at diagnosis (if it is not rude of me to ask)?

43%.  By the way, there is virtually no risk to try a dose reduction given your current PCR level.  If your PCR starts to rise, you just go back to full dose again.  Testing frequency will probably go up.  My guess is you will do fine on lower dose. 

Has your experience and excellent response encouraged your doctor to attempt dose reduction for other patients as well?

I don't know about my doctor but I have heard that more and more oncologists who treat CML are beginning to recognize that TKI treatment is about fining the least amount of dose that will acceptably control the disease (>MMR).  Below is another study supporting the efficacy of reduced dose Tasigna:

https://www.cancertherapyadvisor.com/chronic-myeloid-leukemia/chronic-le...

Thank you for these articles. I saved them to my phone so that I can share them with my doctor. You have been an excellent resource.