CLL Support Association
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Is ibrutinib enough?

Hi all, new to posting, so hope to be concise as possible. Currently on ibrutinib now for 14 months with a wonderful response other than the multitude of irritating side effects. My question is do I continue to be satisfied with where I am in treatment or should I be more aggressive in seeking a complete cure while it is beaten back? I always wonder am I doing enough. I was diagnosed in 2012 with CLL at age 41. Due to rapid doubling time and symptoms it was decided I needed treatment. Took 6 months of FCR ending in July 2013 with a CR. I relapsed with a very aggressive vengeance in December 2014. This time it returned with 17p deletion, ZAP-70 & CD38 positive with complex karyotype, about every bad prognosticator you can get. Should I be seeking out more aggressive therapy, what happens/options if ibrutinib stops working? I'm "only" 45 with two young children and I want to be around to see graduation, weddings and grandchildren!

Any info is greatly appreciated.

Kelcorn ;-)

3 Replies

I ask the same question from my oncologist every two months that I see him, what happens when Imbruvica stops working? His response has been the same, have some faith and we cross that bridge when we get there. You and I both are just adding more unnecessary anxiety to our lives. Have some faith. I wish you the best.

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IF Ibrutinib stops working for you, the current strategy is to switch to Idelalisb, or perhaps join the ACP-196 clinical trial. There's also Venetoclax plus other drugs in the pipeline.

Researchers agree with you that Ibrutinib is not enough, which is why you have the above alternatives. More importantly, research is underway to find drug combinations - together or sequentially, that will eliminate the need for expensive maintenance treatments with associated side effects and provide lengthy remissions periods if not a cure.

Very good reasons to have faith as Shazie says, that you will see your grandchildren!



You've probably said what all CLL patients feel ...... Isn't there more I can do. Sure there's more we can do. Trouble is, more isn't always better. At the moment the only "get rid of it" paths aren't guaranteed, very tough to go thru, and could end up very badly. I'm sure we all agree that learning to be satisfied with "almost" or "so far so good" isn't what we hoped for. T cell genetic manipulation, and transplants, are about all there are for the ultimate get out of dodge, IF we can survive them. The numbers aren't great. That's not to say that's not right for a particular patient. But it is a crap shoot. you may want to discuss those with your doctor, and then perhaps arrange a consult with the very best of those who do them. At least in that way you'd be able to rest more easily with the thought that you'd explored all of the options, whether they're the most comfortable for you. We all have different levels of risk tolerance.

Your doctor is right, there are options coming down the pipe line very quickly now; far faster than when I was diagnosed in 2008, 09. Then pretty much all we had was chlorambucil, or FCR, trials and of course transplants, but those were generally for patients who'd tried nearly everything and got worse. Many wondered if there might be some wisdom in approaching transplants sooner, when patients weren't worn out. Even now, most transplanting is used on pretty heavily pretreated patients. there ARE options, but also risks. I pretty well ditto what Neil and your doctor said. Take what you've got, and when you need more it will probably be there for you. Keep staying informed and asking questions, for sure, and even explore anything you think sounds promising, but don't be too disappointed with what you've got now. Wishing you the best. Beth


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