9 replies to this topic

[hannibellemo]

Hi, everyone,

It took 15 months to get back to MMR after PE and dose reduction on Sprycel but I just got the results today - .007% bcr/abl which is equivalent to .02% on the IS!  I may not be the poster child, I think that honor belongs to Scuba, but I hope my experience also encourages members to talk with their doctors about dose reduction to help with side effects. One size fits all is not necessarily true for our TKIs. It may not work for everyone, but our disease, for many, gives us the luxury to experiment and find a dose we can live with! (It goes without saying that this is working with your oncologist before making changes.)

Pat

[Trey]

I think you have now emerged onto the Great Glassy Sea.  Fair winds, smooth sailing, and many sunsets ahead. 

[scuba]

Pat - Good news indeed. For those who respond to TKI therapy with a quick CCyR (FISH = Zero), dose reduction is definitely a viable way to maintain high quality of life, minimal side effects and still have lifelong disease control. It certainly has worked for me. It was somewhat comical that I had to urge, convince, beg my doctor to let me increase my low dose just to test if I can get to PCRU. He wanted me to just stay at 20mg and live this way.

My ultimate goal is to stop taking Sprycel altogether. I am on 40mg only until my next PCR test, then back to 20mg for a maintenance test (i.e. see if I can keep PCRU while on a renewed lower dose). I am borderline PCRU now (MMR like yourself). If I find that my next PCR there has been little change (no PCRU or log drop), then I'll still go back to 20mg and let that be my functional dose until something new comes along. I am getting close to the end of my experiments.

Personally - I do not understand why Oncologists keep their patients at 70-100mg of Sprycel after they achieve MMR. Sprycel is toxic - long term effects are not known yet (hint of bone issues/Osteocyte issues are emerging). Dr. Cortes believes that the lower dose the better if it works in order to avoid severe side effects and be able to stay on treatment.

[GerryL]

Congratulations Pat.

[Susan61]

Congratulations Pat!!!!!!!!!    We love to hear good news, and especially after all you went through with the PE.

It is amazing how these TKI drugs work.  You deserve this so much.

[Tedsey]

What great news Pat!  My mother always used that expression ("from your mouth into God's ears")!  Your heading made me giggle!  Do I sense a touch of Beatles too?

Hope the PCRU Gods bless you next,

Tedsey

[hannibellemo]

Thanks, Ted's (and all my BIFs) for your good wishes! Actually, I was thinking of something that Trey wrote in one of my posts. I've tried to find it, but when one whines as much as I do, it's hard to keep track!  

Pat

[Trey]

http://community.lls.org/thread/19428

Also, there was that moose and plastic buffalo thingy I posted............probably not it.  But it was a good one.

[hannibellemo]

I think we can all agree that the moose and buffalo post was, indeed, unforgettable!