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6 months of alternate day treatment with 20 mg. Sprycel

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I just got the results from my recent (2/13/2020) PCR. In November, after 3 months of alternate day therapy in which my results went from CMR (on 20 mg every day) to 0.0032, my most recent result is 0.004. So, essentially the same. I want to use up my 50 mg Sprycel before they expire in July and Dr. A-K does not have a problem with me splitting my tablets so I will be taking slightly more than 20 mg every other day for the next 3 months.

I'm still draining but it's down to every other day. The pulmonologists and oncologists don't know if the Sprycel continues to cause this. My presentation of one lung involvement only (both times, though) is so very unusual. Nor had the pulmonologists ever seen anything like the tissue biopsy of my pleura which turned out to be just inflammatory tissue. When Mayo hasn't seen something one has to wonder.

As we continue to deal with CML and side effects I try to keep good thoughts of peace and comfort for us all!

I've attached links to my posts on the LLS site about my ongoing pleural effusion if anyone is interested.

https://communityview.lls.org/statuses/5175

https://communityview.lls.org/statuses/5443

https://communityview.lls.org/statuses/5953

https://communityview.lls.org/statuses/6584

My thoughts on the inflammatory tissue result:  I can't help but wonder if this doesn't fall into the category of weird stuff that TKI's do that screw up tests and things that make it LOOK like something is going on, but there really isn't a disease process.  Like, imatinib causing a high creatinine test but with zero renal disease component.  Liver values ditto, sometimes.  There are more.  The key will be if you can stay on 20 mg Sprycel and stop draining.  I'm sure the minimal residual fluid will never go away as long as we're on Sprycel, but if it's minimal and stable, it seems to be relatively benign (i.e., no symptoms or harm.)  If you can just get to that point!  I hope you can.  Then, it just becomes another CML mindgame.  So glad your PCR is stable and super low on alternate day therapy!!

I'm on 70mg Sprycel every day and I was just at 0.0312 and my Doc said if the next test is same or lower I can drop to 50mg. Thing is I have inflamation in all my joints. My muscles ache and my ribs hurt and now all of a sudden I'm getting bone spurs on my spine all down my neck on both sides. So my neck hurts. I'm pretty used to the pain and inflamation. I take Aleve 250mg 3x a day as prescribed by my Cancer Doc. They took me off the Percocet because I was in pain while using Percocet so they really didn't do anything for me. I also skip my Sprycel probably twice a week and I'm still doing great and my test results are still staying real low. Next test is 6 weeks from now so If its low again I get to lower my dose to 50mg a day and hopefully some of the pain goes away but I doubt it. I thing all TKI's give bone and muscle pain and weakness in the muscles .