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Non detectable-Yay!Now what?

Hi friends,got text from Haemotologist and I am now undetectable after just 3months 50 mg Sprycel!!!Just wanted share good news and also ask,should I now drop meds? It’s only because of this site that I was able start on 50mgs and it has done the trick,Would you advise dropping now?I will have to chop tabs in half so will be 25mgs.As usual,any advice GREATLY appreciated.

Congratulations!

There is increasing evidence that LOWER starting dose sprycel can be MORE effective than higher dose for many patients. The key seems to be sprycel's impact in suppressing your normal immune system at higher doses. Patients who experience either pleural effusions and/or suppressed blood counts due to sprycel seem to be very good candidates with excellent response on lower dasatinib doses. I was one of them and have been on 20 mg sprycel and remain "undetected" for over two years - getting ready to stop taking sprycel altogether!

You could consider dropping your dose further to 20 mg and test that it works (I believe it will). You then keep it there as maintenance for at least two years. You need to be "undetected" for a minimum of two years before testing that you can stop.

You are in a good place. CML is history for you.

 

Tanya - SO pleased for you!  Do not drop the meds, however.  Scuba is correct - you need two years of near-or-undetectables before trying that.  The studies show that the more years the better chance you have of durable TFR.  Also, don't want to be the Black Fairy at the cradle, BUT - I got a single undetectable once, and then went back to detectable, so don't let your expectations run away with you.  Keep your hopes up, but not the expectations.

Hiya Tanya ,Well done you ,you must be over the moon and so quick to get there .Wish I knew how I was doing hospital seem to have lost my June test results my Doc never followed it up and it's been 4 weeks since my latest one still no results getting pretty fed up .Keep up the good work and hope you can get 20 mg tabs to save you cutting them up .Regards ,Denise.

David,I don’t think my Doc will agree to 20mg tabs so was going to chop 50”s then see how next bloods are and tell her then!Have read varying things on chopping tabs.Will it be ok to do that?Thank you

Thanks Scuba,yes have read and reread all I can on lower dose Sprycel effectiviity.Not a lot of Doctors are aware of it...Will ask my Doc and take it from there.Thanks for all yr knowledge and input on this forum

I hear you Kat,May just continue on then or give the lower dose a covert go and see how bloods are.Much thanks for ur input and hope you are going well too😊❤️

Hey Denise,good to hear from you and hope yr bloods are found soon and that they are good!Let me know Denise and God Bless 😊❤️

Hiya Tanya ,finally had my blood results 0.01 % thank goodness such a relief it is a reduction as they messed my last two tests up.How are you doing did you reduce dose to 20mgs or stay at 50 ,interested to hear what your doc said if you suggested it ,Hope you are well ,Denise.

That’s great Denise,and a relief for you!Am happy for you🙂Am going see Doc again in November,she was going to discuss me going to 20mg with her colleagues as she has never had anyone on that dose,let alone go off meds all together.If my next bloods remain undetectable,I am going to insist on lowering g to 20mgs.Will let y’all know.much love and stay in touch 😊❤️

Bit of good news to brighten up a rainy day! 😁

Denise great news. Any side effect issues?

Hi Alastair, my eyesight has changed slightly need reading glasses now they changed quite quickly after starting Dasatinib and I had only just had my eyes tested and there wasn't any change then .Also I have bone pain in my hip and down my thigh and a powdery sense of taste ,it's strange it's like a cornflower after taste .Hoping I can reduce down to 20mgs soon to see if any of this goes away.You seem to be doing amazingly well going treatment free ,Good Luck in the future and Keep well ,Regards ,Denise.

 

Hi,

  I have been on Sprycel (dasatinib) for three years now and just today I have developed a bad taste in my month that will not go away.  How long did the powdery sense of taste you describe last? 

 

Jeremy

Hi Jeremy ,I was blaming the Dasatinib but it turns out it was the toothpaste I was using .It was a strong tasting Oral b ,after reading reviews of it people were saying it was too harsh and causing skin to peel inside the mouth and lips ,so I stopped using it and after a few days the powdery taste had gone .Thank god cos it was driving me mad I couldn't taste things like vinegar for instance .So experiment ,a change of toothpaste could be it ,Good Luck , Denise.