What Happens If I Stop Taking My Oral CLL Treatment on Schedule?

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Topics include: Treatment

Is it okay to stop taking my oral CLL medications?  How could it affect my health? An expert panel, including Dr. Jeff Sharman, Medical Director of The US Oncology Network and Dr. George Follows of Cambridge University Hospitals, discuss reasons why patients stop taking their oral medications according to schedule.  Learn how treatment breaks can impact health and outcomes. 

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Andrew Schorr:

Jeff, let’s talk about that for a second. Hallelujah if you can go to oral medicine, powerful medicines if you can remember to take it. But is that an issue of what you call adherence or compliance for some, these oral medicines now you have in CLL?

Dr. Sharman:

It’s a major issue, and it’s not the first time we’ve seen this. I think it’s relevant to look back on our history. Chronic myelogenous leukemia, CML, I was going through medical school and CML was a fatal disease. Patients had it for a number of years. There were a handful of things we could do for them. None of them worked very well. They all made the patients feel badly, and then the patients died. 

That was CML up until about 2000. What it means to have CML changed with the invention of imatinib, or Gleevec. Suddenly these patients who didn’t know what those dark places were, were honestly spoiled by the success which is CML is no different from hypertension. You just take your pills. But in a lot of these cancer drugs, because we’re addressing a potentially fatal diagnosis, we allow side effects through in cancer drugs that we might not allow in other drugs. So some chronic, low-grade joint aches, muscle pains, diarrhea that would make a blood pressure medication fail completely is acceptable to a cancer drug. 

So for our patients who don’t know what chemotherapy—I really appreciate the way you described that. The patients who have been through treatment before, you bet; they do not miss their pills. But it’s not uncommon seven, eight months after you’ve had somebody on this frontline for them to sort of geez, I have a couple pills left this month, and they forget about it. There are a couple important things about that. Number one, data has been presented that dose interruptions in excess of eight days doubles the risk of treatment failure.

Doses less than the prescribed dose, less than three capsules daily, is associated with inferior outcome. And we see in data at this meeting that there is a somewhat alarming rate of treatment discontinuation if you follow patients for about a year. I would be super curious to know more about what you published in Hematologic, because I actually hadn’t seen that manuscript yet.

Dr. Follows:        

Yes, Jeff. We crawled all over this, actually. We had data from 315 patients from 62 centers across the UK and Ireland. I know people are slightly nervous about this term “real world,” but you know it is real world. This is out there—community hospitals, university centers, a real mix. We got some pretty hard data points in terms of the number of patients still on therapy at one year, which is about three-quarters. It’s a bit down on RESONATE but still pretty good for a drug going out there in wide usage.

And survival was 83, 84 percent at one year. But interestingly, we did have quite a lot of dose interruption, quite a lot of breaks in therapy. We spent a lot of time with a statistician crawling all over this data. And you can chop it in many ways, and I’ve got to be careful what I say, because remember, this is retrospective. It’s not prospective.

But for us, treatment breaks and being off therapy for beyond 14 days did clearly associate with worse outcome, not just in the year on therapy, but actually our statisticians did a really good thing. They in effect did a landmark analysis, which is where you take all of your patients at one year who are alive and say look, you’re alive. You’ve never come off. You’re alive. You’ve had dose reductions. And you’re alive, but you had breaks in therapy in your first year.

And then track them, their data over the coming year—and found again that even those patients who are taking their drug at one year but had long breaks, seemed to have an inferior outcome the following period of time. So all of this, take it carefully, because it’s retrospective analysis, and it needs longer follow-up. But it just reminds us that these drugs, they work, and you’ve probably got to keep taking them.

Dr. Sharman:       

They work if you take them.

Andrew Schorr:

I have another condition that I developed, a second malignancy called myelofibrosis. I take a drug called ruxolitinib (Jakafi), and I have my pill box nextto the sink when I brush my teeth in the morning and at night, and the days, and I never miss it.

I really worry about it. I’ve been told that if I did miss it, there’d be sort of a rebound effect that wouldn't be good. And I’ve been through chemotherapy, and I know what that’s like, so I want to take the pill. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on June 21, 2017