A CML Advocate's Perspective on News from ASH 2012

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Topics include: Treatments and Patient Stories

Greg Stephens, executive director of the National CML Society, a Patient Power partner, reports from the ASH meeting on his excitement about the expanding range of approved therapies for CML. He is very pleased there are new options for people living with "mutated disease." However, he advises patients to stick with therapies that may be working for them rather than simply changing because something is new. Greg, the son of a woman who died from CML, is thrilled with the progress, but he reminds patients that the disease remains serious and patients must work with their doctors to ensure their treatment is right for their personal situation.

 

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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.

Andrew Schorr:

Hello and welcome to Patient Power.  I’m Andrew Schorr.  Each year we go to the American Society of Hematology meeting, this year in Atlanta, and it is always a pleasure to see our partner Greg Stephens.  He’s the executive director and the founder of the National CML Society.  Greg sat down with us. 

Greg, give us your overview of this meeting, what you’re excited about. 

Greg Stephens:

Well, of course, Andrew, this is the first ASH meeting since the approval of two additional therapies, Bosulif or bosutinib, which is now available in the frontline setting, and then recently the approval of omacetaxine mepesuccinate, which is the Synribo drug, and both of these are going to add to our armamentarium for our patient population. 

We’re very glad to see these additional things because one thing we know, the drug that works for you might not necessarily work for the next person, we need those options, and we’re very grateful to have them.  This meeting has been exciting in that we’re now being able to talk about additional approved therapies and see the results that are happening in real world outside the setting of a clinical trial. 

Andrew Schorr:

Greg, as you well know, at this meeting there has been a lot of buzz about what could be seen as a more powerful TKI, ponatinib (ARIAD, Iclusig), not yet approved, may be approved soon, and whether that could help a broader range of CML patients, some who have not done well on some of the other drugs.  What’s your view of it? 

Note: Ponatinib is now an approved drug.

Greg Stephens:

Well, there certainly is a lot of excitement about the drug ponatinib (ARIAD, Iclusig), and I think one of the primary things is it truly has made a difference in the lives of people that are living with mutated disease and resistant disease, but also Synribo (omacetaxine mepesuccinate) has done a world of good for patients that are living with T315i mutation and resistant disease as well.  There are actually two drugs now for those patients that are living with that mutated disease and having difficulties. 

But as far as the consideration of ponatinib (ARIAD, Iclusig) and perhaps it coming into frontline therapy sometime soon or in the future, that is a promising thing.  Time will tell how that will play out.  Now, I think the important thing for us as patients in the community is this:  We need to understand that if we’ve had a good response and we’re having a relatively easy, not easy, there’s not an easy journey in CML.  Everybody has their issues with the disease.  We all experience things.  But if our response is being maintained and we are going in the right direction, then there shouldn’t be the need to feel anxious that my drug is not good enough or it’s not as good as this one. 

It’s kind of like the analogy of, hey, if you’ve got a three-year-old Volvo and you’ve got a brand new Yugo, which one are you going to keep?  I think I’d be keeping the Volvo.  But now that’s not to imply that ponatinib (ARIAD, Iclusig) is a Yugo, not at all.  Ponatinib (ARIAD, Iclusig) is a rocket ship, but so are these other drugs because, again, we go back to that same thing we said at the first of the interview, the drug that works for you might not work for the next person. 

The beauty of all of this is that now we can take one step closer to personalized medicine, if you will, because we now have options, and we can take a look at diagnosis, and we can say, You know, in looking at your case we know that this might be better for you as opposed to this, and that way you’d get off to a great start. 

Andrew Schorr:

Greg, if everybody in our video here, our viewers, could be here with us sitting here right now in the CML community, what would you say to them about how you feel about how things have gone at this meeting for them living with CML? 

Greg Stephens:

At this stage of the game, and many of the people in the community know my family’s personal story, and I couldn’t help but think throughout this meeting, if we had only had these things then, things would have been radically different.  I’m more hopeful than ever after seeing this meeting this week.  We’re still going to have our bumps, and I want to make sure that people understand CML is still a very serious disease.  It is still a disease that is going to take individuals, unfortunately, far fewer than in the past, and hopefully one day none. 

But the thing is we have so much hope today because now there are five currently FDA-approved therapies that are nothing like the therapies of old, and here in a few weeks after this meeting we’re going to have another.  And the pipeline continues to fill up with prospective treatments for the future.  One day we’re going to crack the code, and I think we just need to stay the course, do our homework, and then when it’s time for the test we can ace that thing and be on to living life, doing whatever you want to do. 

Andrew Schorr:

Greg Stephens, always a pleasure, and really, thank you so much for the devotion of you and your team to patients and families dealing with CML. 

On location in Atlanta at the American Society of Hematology meeting, I’m Andrew Schorr.  Remember, knowledge can be the best medicine of all.

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 December 22, 2013