For 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
Day 5 with Ibrutinib
Well, I am most ecstatic to give this update on what is now day 5 of my new chemo drug, Ibrutinib. While proven to be quite effective, there are a number of possible side effects associated with this drug. The keyword for me so far is “possible” because I have felt little to zero side effects at all since taking my first dose. If I had to reach for something, I would say maybe there has been some mild and occasional tiredness which in reality I could chalk up to simply living life.
Lymph nodes are shrinking significantly and I generally feel really good. In fact, on my 2nd day I went out for what ended up being a pretty strong 5 mile run along Philadelphia’s Forbidden Drive. And it was one of my best runs in a while.
The real test will be in the coming weeks because today, I am also starting to taper off of a high dose round of steroids. Next week, I’ll be completely off of the steroids and it will just be me and Ibrutinib. The fact remains though that I’m experiencing no negative side effects from the new drug, and that has us all pretty happy!
Stay tuned.