You are here

Husband has reached undetectable

Haven't been on the forum for a while  but wanted to share that today we got the news that my husband Paul has reached 0.000, MR 4.5,  18 months after diagnosis. He's currently on 60 mg of Sprycel but hoping to cut to 40 mg (since he has takes 3 x 20 mg pills every day he is very tempted to start tonight). Hoping that he will be able to further reduce to 20 mg and in a couple of years try cessation.

So very grateful for this site and all who helped us along the way. It was a life saver. And wishing everyone on here the very best !

Louise 

GREAT news, Louise!

Louise - fantastic! and after only 18 months!

Cutting dose is a good idea. According to Dr. Cortes, better to cut dose and delay stopping until later, than to stay at  higher dose and try cessation sooner. On 20 mg, for example, he will likely feel no side effects and not even realize any longer he has/had CML. I feel no side effects on 20 mg.

There is emerging data showing cessation after 4-6 years yields better long term treatment free remission than after two years. However - like your husband, I want to try after I pass the two year mark and stop taking sprycel - I can always go back on drug, although it will reset the clock.

 

Congrats! On to TFR when appropriate. Happy for you guys.

Scuba, this is my opinion too. The DESTINY trial supports this too - depth of molecular response isn’t good enough to predict successful TFR, time at depth is important too. So there’s something important going on that we don’t really fully understand.

DESTINY was unusual insofar it had a de-escalation aspect to the trial. Some clinical thought this was crazy, even dangerous as it would encourage CML mutation. But that hasn’t proved to be the case, and Dr Cortes’ research is also bearing fruit in this regard.

I’ve been chipping away at my dose over time and should find out more results soon. I’m fairly happy at 20mg dasatinib - side effects are definitely better than at higher doses. I’ve had an incredibly busy and difficult last 12 months and I don’t think I’d be doing as well as I am if I had stayed on 100mg. All the same, I’m being very cautious and while TFR is a nice idea, the reality is 20mg is pretty good. If that can control things from now on and I don’t have to go up to a higher dose, I think I’d take that in a heartbeat. 

David.

Hi David,

And now for something completely different.

Taking dasatinib can be good for you apart from CML!

https://www.sciencedaily.com/releases/2019/01/190107112944.htm

https://www.scientificamerican.com/article/to-stay-young-kill-zombie-cells/

Study showed dasatnib + quercetin affects senescent cells helping to clear them out so younger cells can take over.

This is quite interesting. I may just stay on 20 mg sprycel as a fountain of youth! I already take quercetin.

 

Thanks for the good wishes. Each time he has cut down by 10 mg he has felt such a difference so really hoping a cut to 40 will help a lot. 

Unfortunately his doctor wants him to stay on 60 mg for another 3 months but he is going to argue his case. 

We will definitely keep a close eye on the Destiny trial. 

 

This is amazing news!  WOW!