Kat and Scuba,
I haven't posted about my last visit to Mayo yet, but this seems as good a time as any. My current onc switched me to a colleague on the myeloid side when it became apparent that I was no longer a boring CML patient after 10 years. Dr. A-K did his leukemia fellowship with Dr. Cortez so I feel pretty good about him professionally.
Short background, one year ago today, I started experiencing signs of pleural effusion. I had been on 50 mg Sprycel since May of 2012 when I had my first pleural effusion 2.5 years after switching to Sprycel 100 mg from Gleevec due to liver toxicity. My first pleural effusion (in my right lung) went away after discontinuation of Sprycel for about 2.5 months.
This time the effusion (in my left lung) continued to be consistent. There was no lessening of the fluid after 2 months off drug and I lost MMR. We decided to insert an indwelling pleural catheter so I could drain fluid daily on my own and reduce Sprycel to 20 mg. thinking the effusion would subside quickly. I'm still draining, but the amount has recently reduced drastically so perhaps there is a light at the end of the tunnel.
Dr. G wanted to switch me to bosulif and I have been very resistant to that idea. After 10 years I did not want to deal with new side effects that could be worse than what I was already dealing with. So, enter Dr. A-K, who, as it turns out, dislikes bosulif as much as I. In his estimation there have been too many cases of grade 3/4 colitis with bosulif that have required hospitalization. If there are other options for treatment he would try those first.
Here's a couple of interesting factoids I learned from him:
1. 85 - 90% of CML patients at the Mayo Clinic are on Gleevec. For some reason that surprised me.
2. It is very unusual to experience grade 3/4 pleural effusion in just one lung and even more unusual for it to re-occur in the other lung. (Clarification: re-occurrence usually happens in same lung as first effusion.)
Dr. A-K gave me four options for treatment, of which only the first two were ones that interested either of us; continue what we were doing, 20 mg. daily and hope the fluid eventually goes away, (I forgot to mention that I regained CMR 3 months after starting Sprycel 20 mg in December 2018) OR, try 20 mg. every other day and see what happens. He has a couple of patients who are doing very well at that level.
So, I chose option 2. I'll have a PCR mid-October so I will update you when I get results. My goal is MMR or below.