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Treating MPN-Related Anxiety and Depression

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Published on December 16, 2019

Key Takeaways

  • Talk to your doctor about your feelings. 
  • Sometimes there is a stigma that prevents people getting the treatment they need. 
  • It’s important to consider all support options if you have feelings of anxiety or depression.

During this highlight from our “Getting Support with an MPN Diagnosis” program, a panel including a myeloproliferative neoplasm (MPN) expert, patient and care partner open up about feelings of sadness, grief, anxiety and fear that can affect patients and their loved ones, and coping strategies using medication or therapy. Watch as the panel explains why it’s important to find ways to manage these feelings despite social stigmas that prevent many from talking to their doctor, and things to discuss with your healthcare team to learn about options.

The Partners series is sponsored by Incyte Corporation. This organization has no editorial control. It is produced solely by Patient Power.

Featuring

All I can say is wow. This is completely fantastic. I am newly MF dx and live in France and am frustrated with language barriers. The information I receive via Patient Power and from this town meeting is priceless.

— Jane , online attendee of Stanford MPN meeting

Transcript | Treating MPN-Related Anxiety and Depression

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.

Beth Probert:               

I don’t know if anyone in the group has any feedback about this, but these are real feelings, whether you’re the caregiver or whether you are the patient, of sadness, grief, anxiety, fear.

And you know, where does medication come into play? Sometimes there’s a stigma that no, no, no, you’ve got to go through this yourself. And no, no, you don’t need anything to help you through this. But that’s not reality. You know, lucky enough, we’re living in a society that if we sometimes need some support that also includes medication to deal with this, you know, I just want to open up the discussion real quickly for that.

And, Esther, do you have any feedback with any of that?

Esther Schorr:              

Yeah, and I’ve been very open in other programs through Patient Power. When Andrew was first diagnosed, we’re talking here about MPNs, but many years before he was diagnosed with another blood cancer, and at the time we had two young kids, we were wanting to have a third child. And basically Andrew went through his, as Maryann talked about, his own form of a grieving process and a rearing its practical head. You know, okay, we’re going to just attack this, and here’s what we need to do. We need to find a doctor. And you know, he kind of pulled it together, in a way.

It was more difficult for me, and I ended up turning to counseling. And because my anxiety and my own grief and fear of what was going to happen, I ended up getting on some medication for anxiety.

And to this day, I take an anti-anxiety medication, and you know what? Didn’t change me as a person. It just helps me to get through the ups and downs, because we have them. A blood test goes the wrong way, something happens with our kids, I mean, it’s not even just about Andrew’s diagnosis. It’s how I’m wired, and I feel like I needed to accept what I can tolerate and what I can’t in order to be healthy myself and to be able to give to my husband, my partner, to my business, to my kids, to my family.

So you know, I understand that there’s still stigma around those things, but I know it helped me a lot. So no stigma here.

Beth Probert:               

And, Esther, that is so welcoming to hear because unfortunately, there is this unbelievable stigma.

Esther Schorr:              

I know.

Beth Probert:               

But for us as a group and a community, and you, we’re not superhuman people. So I’m so glad to hear that those things are available to us.

Esther Schorr:              

They are.

Beth Probert:               

And help us just manage a huge part of our life. Lindsey, I imagine that with your wonderful support to the patients and caregivers, can you just touch on that a few moments as well? 

Lindsey Lyle:                

Absolutely. So you know, I do have the fortunate ability to really be with my patients throughout the course of their illness. This is something, it’s why I love this job and profession and this specialty. But I feel like sometimes I can notice, even as I’ve said before, changes in my patients’ mood, even before they are really bringing it to the table. And so often if I am astute enough, and not flying in and out on a crazy day, which I always have to remind myself, slow down. Let myself be present. See what’s actually going on.

But you know, if I feel like one of my patients perhaps based on how they’re interacting with me, or even maybe from a care partner who says to me, pulls me aside and says, “You know, so-and-so is really struggling with feelings of sadness, and it’s becoming to the point where they’re not acting like themselves. Or their habits are changing, they’re not able to kind of do the things they normally did, they don’t like the things they normally did, or don’t want to do the things they normally like to do.” Sorry.

But you know, in those sort of situations, I’m really not afraid to bring up medication with patients. So I generally do get my psychology colleagues involved, but then if I feel comfortable maybe starting a medication and monitoring them, if I’m seeing somebody very closely, I’m certainly not afraid to do that. 

I think that one of the biggest fears from a patient perspective is that it will change their personality, and I think that is something that I try to spend a lot of time communicating to the patient, that it certainly isn’t. And then also, you know, this may be a long-term medication, but it may not, especially in periods of adjustment or a new diagnosis or perhaps their disease is changing, or perhaps there are other things going on in their life aside from just the MPN that they’re handling.

And so just kind of talking through all of those things with my patients I think is really critical.

But I would say that probably my patients don’t bring it up as much as probably they should. And so this would be my recommendation to all the patients who are listening, is that if you do have these feelings of extreme sadness or really just kind of lacking desire to do things that you normally would like to do, I would really bring this up with your provider because sometimes it’s hard for us to know unless you bring that to the table, and there are certainly ways to help.

So I never want people to kind of feel stuck in this because it can be just kind of a negative circle effect if we don’t intervene when we should.

Beth Probert:               

I think that’s great advice, and I like the fact that you touched on allaying their fears that this is not going to be a complete change. The medication is there for you, and it’s not going to change you as a person. And I know that is a real fear.

Maryann, did you have any feedback about this topic as well?

Dr. Gray:                      

In general, I believe that medication should be handled in concert with talk therapy, not as an alternative to talk therapy. In addition, I just want to say that having medical professionals like Lindsey or nurse practitioners, highly skilled practitioners who are not MDs, can be extremely helpful to the coping and management experience.

My doctor is amazing. I adore him. But he is super busy. He runs in, he examines me, he looks at my labs, he asks some questions. He makes a decision about treatment or we talk about treatment, and then we’re on to the next. It’s the nurse practitioner that I can really sit down with and have the kind of conversation that I think Lindsey has with her patients, and it’s so helpful.

So when I have questions that I think, oh, that’s kind of a stupid question, but I want to ask it anyway, or the emotional side, the softer side, I deal with that typically with the nurse practitioner. I don’t expect my hematologist/oncologist to have that particular set of emotional skills. Some do, some don’t, but I don’t ask that of him.

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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