A New Chapter

D4DEFFB7-2F8D-445D-83C8-B2849174CD25For 12 years I’ve managed my CLL by reacting to flare ups and relapses with periodic chemo treatments using drugs like Bendeka, Fludara, and Rituxan, and megadoses of steroids like Decadron, Prednidone. That accounted for 54 rounds of toxic chemo and God only knows how many steroid cycles over those 12 years.

I experienced another flare up this week which has led us to the decision to move onto a wonder drug called ibrutinib. A once a day pill which I’ll need to take “forever” ( or until new research dictates otherwise). This drug will essentially allow me to manage this disease preventatively rather than waiting for a relapse to then treat. Ibrutinib  has been phenomenally successful with CLL patients and while my jury is still out, the side effects are expected to be minimal and manageable.


And it comes as no surprise that funding for ibrutinib’s research on CLL applicability was provided by The Leukemia & Lymphoma Society. I don’t want to hit the  celebration button yet as this stuff now needs to do what it’s supposed to do, and I need to tolerate it. But if this works, it’s the end of conventional toxic chemo and infusion as I’ve known it. And if this works, a lot of prayers were answered this week.

So I now take my chemo “to go” and in the comfort of my own home. It’s a good day. But then again, they’re all good days. That’s a choice we can make and I choose good.

#cll #chroniclymphocyticleukemia #lls #leukemia&lymphomasociety #tnt #ibrutinib #imbruvica # janssenpharmaceuticals #survivor #relentless #somedayistoday

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