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Switching meds from Dasatinib to nalotinib

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Hi,

I've posted before awhile back. I wanted to get some opinions and personal experiences.   I currently take sprycel (dasatinab) for 1 1/2 years before that gleevec.   My bcr has been steady for last 6 months .33 .2 , .12 and now .19   So went up just  a little   I have two different doctors   One is a clinical trials dr that says I shouldn’t change medicine  he has seen 10s of thousand d of these and I will be ok    My other dr which is new says dasatinab is quite working And she decided to change it to nalotinab   Which I haven’t started yet    She did a mutation test for the dasatinab and it shows no mutations    But she feels like I should switch medication     I’m really confused   She also wants to to a bone marrow test that my other dr says is not needed   Now I’m a little worried about these side effects of the new Medicine nalotinab     I would love to hear about some insights from f everyone that is on nalotinab   I appreciate all the advice    I’ve been very stressed on what to do   
 

Sherley Delpozo 

 

Saw this after your other post, to which I had replied, "Why do they want to switch you?"  I see NO reason, if there is no more to the picture than what you have stated, for a switch.  You are doing great on the dasatinib.  There is no statistical significance between .12 and .19.  Nilotinib is taken twice a day vs. dasatinib's once, AND it has to be fasting. Some doctors are messing with these strictures, but it's still the official way.  Listen to the first guy!

Hi Kat, 

 

thanks for your response!   I did forget to mention That I have been anemic for last few months.   But not terribly anemic. I believe that   Is bc of meds and is normal.  She didn’t t even tell me it was twice a day until I read that on this forum.   Ive been so stressed out about this decision.   She wants to do a bone marrow test too.  Bc she says I’ve never had one before.  She said it would tell her more about what’s going on.  It really gets overwhelming when you have to make decisions that’s so important to your own life.

 

thank you again for tour advice:)

 

sherley

This is ridiculous 0.12 and 0.19 is considered the same result and although on paper it looks like an increase it isn’t. My doc is a CML expert and at my 18 month PCR I was 0.118 at 24 month I was 0.164 on Nilotinib he affirmed this is NOT an increase. It is well within the margin of error or noise of the test and/or small resistance. You could have the same test the same day from the other arm and it would likely be lower again.

The doc that wants to switch you and/or perform another unneeded BM aspiration is potentially dangerous. And or just wants a pay check.

Stay the course and you’ll likely continue to drop its way too early to switch. Actually switching can induce unwanted mutations so stay the course you’re stable and below 1% which is the only number you need to care about.

Keep those other drugs in your back pocket for when you REALLY need them as this will be your  3rd of 5! Nilotinib is very similar too to Imatinib and has the pain of fasting and having to take x4 pills twice a day 12 days apart. And from what I’ve seen is one the worst offender TKIs for inducing diabetes and higher cholesterol as well as other nasty things. I have tolerated it well but another 30 years who knows...

Keep us updated

All the best

Alex

Thank you Alex!   I’m so happy to get these replies.  It’s just been driving me crazy. Woke up with migraine worrying myself about this decision.  Same thing with other doctor  he told me he has seen Tena of thousand of these.  He is a clinical trials doctor.  But I’ve been seeing him since day one.  He keeps in touch with me every 3 months.  My local doctor retired 3 months and I was assigned to this new doctor that wants to change everything.   My last doctor told me to listen to the he clinical trial doctor bc he has dealt woth more CML in a week than he has in a year.  He knows that the clinical trials doctor knows what he is doing and for me to take his advice too.   I appreciate your input.  :)  I wish all the best for you too and everyone else in this board  ðŸ¤—

sherley

No problem you’ve got good advice there stick to that and listen to clinical trial doc and maybe switch doctors if they persist with this idiotic recommendation. You need the experience with CML it really is life dependent that docs have that.

Good luck with everything

Alex

Totally agree with Alex.

Hi Sherley,

Just thought I would second what you have been told on the forum. I am in a similar boat where I am on Sprycel 100mg and got down to 0.106% at 24 months and have increased (and plateaued) at about 0.2% for the last 9 months. I recently got my 33 month results and am currently at 0.21%. My oncologist said I am stable and should not be concerned with this trend. I've confirmed the same from a CML specialist in my area. My oncologist said if I prefer, I can try switching to Nilotinib but if side effects are okay with Sprycel she would recommend staying with Sprycel for now. You don't have a wrong choice between the two medications at this point, but if you like Sprycel, I think it probably doesn't hurt to wait and see.

Also, at your levels it seems a bone marrow biopsy wouldn't be needed. I've been told there is no reason to do a biopsy after reaching CCyR because a biopsy cannot find leukemic cells after CCyR. The only reason it would be done now is to check for a secondary chromosome translocation. Perhaps if your CBC values are way out of whack. Not just stable and low as many of ours are (mine included). People on this forum far more knowledgeable on the subject can correct me if I'm wrong.

Ian

Thanks Ian!  I really appreciate your input.  Yes I talked to my second doctor which he has actually been there from day one but only as a second opinion bc o am 3 hours away.   He wrote my doctor and told her that it is unnecessary at this time to change my meds.  He explained to me that a lot of us may only stay at 1% and never get undetectable.   He has been a doctor at OHSU for many years and he is a clinical trial doctor for this CML.    This hospital is also the one that found gleevec in the 1990s.  So I’m pretty comfortable with what he suggest also.      My goal is to one day get off this medication one day.  As he explained to me during his trials.  People that do get off after they reach an undetectable reading that 50% relapse within a year and have to get back in medication.   I use to take thc oil the first 6 months with my gleevec  I dropped almost 50%.  Then I stopped doing my oil and since then it’s been slow.  Once I start my oil again. I will let you guys know what my results are.  It has been 11/2 years since I used the oil.  Thank you very much.  I hope the best for all of us😊.   Good luck on tour journey.  
 

Sherley