First let me say I am sorry to hear about all the trouble with Plueral Effusions that you have had. I hope everything gets worked out well for you.
You asked for my thoughts:
I think Sprycel is a very potent drug. It worked wonders for me. I reached MMR within 3 months of diagnosis and my PCR numbers kept dropping from there even on reduced dose. I was on 50 mgm for the last 18 months with all zeros with my PCR (0.0000). Then, the plueral effusion resulted in removal of over a Liter of fluid. Yikes!! I believe that one was simply a continuation of a small one that I had for sometime that was lurking around, then it grew. I was also sick twice with respiratory and that may have contributed.
Now I too stopped the drug for almost 4 months, but it is now time to go back on a TKI. My last PCR two weeks ago was 0.0293. Even though that is still very low, I am uncomfortable about staying off the drug at this point, because if it continues to grow, I don’t want to have to resort to a high dose of TKI to get it back in control.
I want to try Sprycel 20 mgm but I am scared. What if the cml keeps growing?
My onc has discussed various options such as Gleevic full dose or stick with Sprycel at 50 mgm for a few days on and a couple days off each week to see if that works. He is willing to consider 20 mgm but wants articles, journals where this has been done to read.
I have wondered about 40mgm per day until I get to 0,0000 again and then reduce to 20 mgm.
Any way you shake it, the decision will be taking the plunge with some attempt to figure it out and hope it works.
Right now I am temporarily on Sprycel 50 mgm until a decision is made. Just keeping my fingers crossed that the PE doesn’t come roaring back.
I dread the thought of full Gleevic and all the edema which they say 80% of people have. I have also read it can reduce bone density which I already have. Then I read it can help with bones. So who knows!!
On Sprycel, I barely had no side effects to really mention others than shortness of breath which I really disliked. Otherwise, it was a good drug for me and it is suppose to be protective of bones. Which is a nice added affect.
So, I don’t know what to suggest. We will need to stay in touch to give each other support on here, so please post what you decide to do and so will I.
It is great that you have such low numbers. It looks like you have some wiggle room while you are deciding.