Living Well: Establishing a Plan for MPN Treatment and Follow-Up

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Tune in to this Patient Power discussion on how patients can go about establishing a plan for MPN treatment and follow-up. Host Andrew Schorr is joined by Dr. Laura Michaelis, Erin Blackwell, RN, and patient advocate Beth Kart Probert. Dr. Michaelis says her strategy for forming a treatment plan entails this checklist, "have we gotten the diagnosis, do we have appropriate risk stratification, have we identified your goals, and what kind of treatments are out there that could accomplish your goals?" The panel also discusses frequency of visits and how you can efficiently contact your doctor with questions about your diagnosis without making an extra visit.

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Transcript

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:

Beth, you started seeing a specialist, and then you had a certain rhythm of visits now that you’ve had over the last year. How often do you go see Dr. Weitz?

Beth Kart Probert:           

I see Dr. Weitz now about every six weeks. At the onset, it was every two weeks and four weeks. But because I am doing much better, it’s now six weeks. 

Andrew Schorr:

Right, and we should mention in your case, you’re one of the folks with PV who is on an interferon. The dose has been adjusted, but it’s working well for you.

Beth Kart Probert:           

It’s working very well.

Andrew Schorr:

Okay, so, Dr. Michaelis, let’s talk about how you establish a treatment plan. So we come in, you confirm the diagnosis, we have some tests. So how does that dialogue go about not specific treatments, but how do you establish a plan?

Dr. Michaelis:     

That’s something I’ve learned as I’ve matured as a doctor, and I feel it’s something I’m getting—I hope to get better at. I start everybody by talking about what is the cause, or what do we think the causes of the disease are. I think it’s helpful for people to understand the way the disease develops, what are the underlying levers and changes in the bone marrow. 

And then we talk about one, have we truly confirmed the diagnosis? Do we have all the tests we need? Once we get through step one, which is confirming the diagnosis, we then go through something called risk stratification. Risk stratification means that we look at what does the disease look like, what are the characteristics of the disease. Are there high-risk characteristics or low-risk characteristics? 

We then look at the patient’s own medical history; their age, their other health issues, their what we call comorbidities; the other things they may be struggling with. And the combination of those two help me determine what’s the likelihood of something bad happening because of the disease or how the disease interacts with the patient. Once we have that risk stratification, then I like to talk about goals. What are this patient’s goals? Some people want to do everything they can to eradicate a disease.

Some people, their important values are their quality of life or being at home with their families. I try and listen to their values and what’s important to them. And then with that, we think about this is the risk the disease poses. These are the goals that you have; what is our panel of options out here? What kind of arrows do we have in our quiver, and how should we choose that treatment based on what we can accomplish, what you want to accomplish, and what we ought to accomplish? 

That’s the kind of dialogue, and I find that that conversation, not the one where you’re first diagnosed, but that conversation of the first discussion of should we start treatment, that’s one of my longest conversations. So I prep patients; this might be a conversation where you want to bring family members. This might be an appointment we’re going to make as a double length, because it’s going to be a little bit longer. Sometimes we’ll have patients bring their iPhone or something, so they can have other family members conference in.

But that decision about starting treatment and which treatment to go for and why is an important one. And finally, we end it all by what should we see if it’s working. So how are we going to measure that this treatment is working for you? What are the types of things we’re going to see and when? And when will we know when it’s not working?

 

So I like to lay it out with saying have we gotten the diagnosis, do we have appropriate risk stratification, have we identified your goals, and what kind of treatments are out there that could accomplish your goals?

 

Andrew Schorr:

I was living in Charlotte for a while, so I went to Erin’s clinic and to see Erin and Dr. Grunwald. We would talk at each visit based on what Dr. Michaelis was just saying: how am I doing, how’s it going; about a frequency visit. Sometimes I’ve had doctors say to me, when do you want to come back? Then I'd say, doctor, when do you think?

 

Well, I think you should come back in three months. Sounds good to me, or should I come back sooner? Erin, you’ve been part of those conversations about frequency of visits. How do you as a team determine that with the patient?

 

Erin Blackwell: 

I think it’s really; again as Dr. Michaelis was referring to, it’s a conversation had by the physician, the provider; what they’re comfortable with versus what the patient is comfortable with. At times, it’s that the patient would like to be seen more frequently than they really need to be for their comfort and their peace of mind. And the physicians usually are okay with that.

Then there are times when they want to go six months without follow-up, and obviously with a lot of our patients, unless they’re just doing very, very well, that’s not feasible or responsible. So it’s always a conversation, and I’m the one to make their follow-up appointments and to give that to them when they’ll leave. So I’ll be the last line if they have an issue with it; they let me know.

Andrew Schorr:

Beth, how often do you go? How often do you see Dr. Weitz?

Beth Kart Probert:           

Now I’m seeing Dr. Weitz every six weeks, and I really took to heart what Dr. Michaelis and Erin just spoke about, because it’s the process I went through. What makes it very comfortable for me now to go every six weeks, I know whenever I have a question I can reach out to Dr. Weitz through the portal email. And it’s amazing; she gets right back to me. So it helps bridge that time going from two weeks, then to four weeks, and now it’s six weeks. I don’t feel alone. I don’t feel like it’s too long, because I know I could reach out to her and her support team, as well. 

Andrew Schorr:

Okay, let’s talk about phone calls and emails. Dr. Michaelis, are patients able to call you? Do you communicate either directly via email sometimes or through the portal that maybe your institution has—many have it; I have it at UCSD here—about visits or connection, if you will, or questions with you or your team when you’re not physically there, when the patient is not physically there?

Dr. Michaelis:     

Absolutely. One of the technologies that is possible now because of these electronic medical records allows what we call asynchronous communication. So you wake up in the morning, and you’re much itchier than you’re used to, or you have a rash, you email me. You don’t have to reach me at that exact moment in time, but I will see it. My nurse sometimes screens it, and if it’s something she thinks is more urgent, she’ll walk it over to my office, or she’ll page me.

If it’s something that can wait, there’s a given period in the day when I take a look at the messages that have come in, that I’ve set aside, and I’ll respond to them. Sometimes a patient wants to talk by phone, which is great. And that, I always ask them leave me a time that’s a good time to talk to you; best for me after 4, before 6. And that’s a time when I tend to be able to communicate with patients. I think one of the key elements is to remember, these are not for something urgent. 

If you have chest pain, if you have severe shortness of breath, if your leg gets suddenly swollen; don’t expect these emails through the electronic medical record to be that timely, because it’s often something that’s done as a routine part of the day but not urgently. Those should be done by a page, and everybody should have a way to page your doctor or their nurse through a triage system. Or if it’s a real emergency, of course, go to the ER or call 9-1-1. 

One of the other things I do is I give my patients a stack of cards. Because if they’re being seen in an emergency room or somewhere, I want them to give my card to that doctor and say: this is my hematologist, I have a rare blood condition; please page her. That’s because sometimes folks live far away from me. And so if they’re up in the upper peninsula of Michigan or skiing somewhere and they have an emergency; their bleeding risks, their clotting risks are unique.

I want people who aren’t familiar with this kind of blood condition to be able to call me anytime, and I can say this person has PV, they’re on a low dose of hydroxyurea (Hydrea); these are the things you need to watch out for. If the person needs to go to surgery emergently, this is what needs to happen afterwards. So I always have my patients carry a stack of cards to distribute. And I say don’t assume any physician knows about this condition; please have them contact me.

Andrew Schorr:

Right. I have a question for you, Dr. Michaelis. So frequency visits, just to go back to that, if you want to see me more often, does that mean things are not going well, and I should start—my blood pressure should go up and—you know?

Dr. Michaelis:     

Not always. Certainly if I get worried about a patient, my solution to that is to pay more attention. So sometimes if I’m worried that somebody’s disease is progressing, I will see them more frequently. But more often, when I see somebody more frequently it’s because we’ve had a turn in the road.

It might be a change from Hydrea to interferon. We might have changed the dose of interferon a little bit. I might be worried about—maybe it’s the time of year, for example flu season. A lot of patients in the fall, we have a lot more hospitalizations with all leukemia patients and also some MPN patients. So sometimes it’s just that—I usually, like Beth’s experience and Erin’s experience, the frequency of visits is often a conversation. I’m not somebody who can go too long without seeing my patients. I want to keep them close so that I monitor them.

But if somebody is getting labs, they live in the upper peninsula of Michigan, they’re getting labs every six weeks and seeing me every 12; that’s fine and just keep up with that.

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 May 16, 2017