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Should Myelofibrosis Patients Worry About Their Spleen Rupturing?

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Published on March 4, 2020

Key Takeaways

  • Myelofibrosis patients typically do not experience a spontaneous rupture of their spleen.
  • Keep a "spleen diary" - make a check on a calendar notating how many good or bad spleen days you are having each month. 
  • If your spleen is causing a negative quality of life, it’s time to talk to your doctor.

Myeloproliferative neoplasm experts Dr. Brady Stein from Robert H. Lurie Cancer Center and Dr. Laura Michaelis, from the Medical College of Wisconsin explain why myelofibrosis patients may not need to worry about their enlarged spleen rupturing and spleen-based signs to start treatment. Watch as the experts describe the role of the spleen in initiating therapy and the importance of tracking how your spleen is feeling over time.

This program is sponsored by Incyte. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

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Transcript | Should Myelofibrosis Patients Worry About Their Spleen Rupturing?

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:           

Do we have to worry about things like our spleen bursting? I know we shouldn’t play tackle football or rugby but activities of life. I know we want to shrink our spleen but even if we still can feel it under our ribs, do we have to worry in a car accident or tell us how to live our lives a little bit. 

Dr. Stein:                     

That’s a good question. The answer is generally no in terms of having a spontaneous rupture of the spleen. In 10 years and seeing many patients of myelofibrosis, I’ve never seen that. That would be more of what we call a case reportable or an anecdotal type of experience. So, of course it causes worry because every time you come to the doctor we’re feeling your spleen or asking about your spleen, the medications that are approved now or looked at in clinical trials are all about the spleen. So, the spleen is always the focus. But it’s really important because everyone has a different experience with their own spleen.

And so, it’s really important as I try to counsel patients when we’re thinking about starting therapy anew. So, for the patient who’s had myelofibrosis, and perhaps it’s a new diagnosis, or they’ve had it for a while but it’s been in a low-risk stage where we’re just observing, one of the biggest decisions is starting therapy. Making that transition from observation to therapy is a big jump for patients for sure. And a lot of the decision-making with the approved drug is based on the spleen. So, those patients who have enormous spleens, but it doesn’t bother them much. So, for those patients if the spleen doesn’t really bother them, I don’t think we’re obligated to treat. 

I have other patients whose spleens to me don’t feel so large, but it causes them a lot of symptoms. So, that’s a real important part of counseling. When I’m evaluating a patient and we’re making that decision I ask them to keep a spleen diary. Just make a check on a calendar how many good days or bad spleen days are you having in a week or a month, because we have to know if there’s more of a negative impact in quality of life from the spleen. That should trigger the treatment decision. So, it’s good to be aware. I don’t think you need to be worried about a spontaneous rupture.

You don’t need to be thinking about it every moment of the day, but remember that the size itself doesn’t trigger the treatment. It’s how you feel. So, if it's troubling youif it’s causing ache, patients are getting full early, they’re having cough, they’re having bladder issues, issues of digestion, sometimes referred pain into the shoulder. 

Andrew Schorr:           

How much they can eat.

Dr. Stein:                     

Yeah. So, those are the things that I try to counsel about. Those are the spleen-related symptoms and if we’re seeing more of those, that’s the time to treat. 

Andrew Schorr:           

Okay.

Dr. Michaelis:              

Can I just say one other thing? And I love this idea of spleen diary, and it also ties into what Angela said before about diet. One thing I talk to my patients about is I give them copies of the SAF formwhich is a form that you can measure how you’ve been feeling. I ask them to keep a diary. And then I say try a new diet where you eat only olive oils, or you maximize your fruits and vegetables for two weeks. Keep a diary, see how you feel. And that can actually give motivation. Same thing for just coming back and keep a diary for two months and then come back, or we’re going to go over it to see if this has made a difference.

So, I really do encourage people to be proactive in how they keep track of symptoms so that it’s not just one bad day that’s going to color everything. Because you may have one bad day, but you might have five that are pretty good, and you don’t think about your disease.

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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