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Progression in MPNs: Allaying Fears and Taking Action

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Published on July 12, 2018

Many myeloproliferative neoplasm (MPN) patients worry about progression, life expectancy and the uncertainties that come with a rare cancer. In part two of our Partners Series, Patient Power founder and myelofibrosis (MF) patient Andrew Schorr, is joined by leading MPN expert Dr. Mark Heaney and two people living with polycythemia vera (PV), Ann and Jonna, to discuss diagnosis, risk stratification, progression, and actionable steps to take to access the best care available. Ann and Jonna walk through their treatment journey, obstacles, fears and drive to continue the life they enjoy while Dr. Heaney provides research-based insight on progression rate, potential complications, disease management and risk-reduction techniques for MPNs. Watch now to learn more.

Sponsored by Incyte Corporation.

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Transcript | Progression in MPNs: Allaying Fears and Taking Action

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.

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 in San Diego, living with myelofibrosis now, about six years. Welcome to this Partners—program. We have some wonderful guests. These Partners Programs are with patients discussing with a leading expert and we’re delighted that we have two PV patients—polycythemia vera—joining us today, along with a leading MPN expert and researcher from New York City. So let’s meet our guests. First of all, let’s go to Atlanta. Jonna Hartman is with us and she’s been living with PV from—since 2005. Jonna, thanks so much for being with us.

Jonna Hartman:  

Thank you.

Andrew Schorr:  

Okay. And then…

Jonna Hartman:  

…glad to be here.

Andrew Schorr:  

Yeah. Thank you so much. And now, let’s go to Champaign, Illinois. Ann Zelinski joins us and you’ve been living with PV since 2001, right?

Ann Zielinski:       

That’s correct. Thank you for having me.

Andrew Schorr:  

No, thank you. And then, what about our expert? Back on Patient Power is Dr. Mark Heaney from Columbia University, an MPN specialist there. Dr. Heaney, welcome back to Patient Power.

Dr. Heaney:         

Thank you so much, Andrew, for—for having me back.

Andrew Schorr:  

Okay. And I want to thank the Insight Corporation through sponsoring this program. They have no editorial control, but we appreciate their support as we produce these progress programs. Okay, so let’s get started. We worry about progression. I’m at one end of the scale: myelofibrosis. Some people are at another end of the scale: essential thrombocythemia, and we have two ladies with us with polycythemia Vera. So, I know that, Ann, when you were diagnosed, you were pretty despondent, worrying what the future was. Maybe you could just describe that for a second.

Ann Zielinski:       

Yes, I went in, like Jonna, on a normal yearly check-up and the doctor called me at work and said “Take this down. You have polycythemia vera.” And he scheduled me with a hematologist, and that hematologist told me “You have five to 10 years to live. Get over it. There are people worse off than you are.” I—because I’m connected with the University of Illinois and part of my faculty were in the College of Medicine, I found people to get a new hematologist at the same clinic who directed me for the next 12 years and the first thing he said was “You and I are going to deal with this for decades to come.” And I think that’s the first time I took a breath.

Andrew Schorr:  

Okay. And the, eventually, you consulted out-of-state with a—one of our leading MPN specialists, Dr. Moliterno. And then, closer to home now, Dr. Brady Stein, up the road in Chicago. And—and then you’ve had your journey along the way. How’s your mood, now, about progression?

Ann Zielinski:       

It’s still on my mind. I don’t think anyone can dismiss it. But now that I see—every time I get a CBC, I get a happy surprise. I don’t have any more immature cells of either line. And my spleen is down significantly. So I’m feeling much, much better.

Andrew Schorr:  

Okay. Good for you. Now, Jonna, you’re more recently diagnosed and you had sort of an adventure to get to the right doctor and now you go to the Winship Cancer at Emory and, like Ann, you’re now on Pegasys, but along the way, you’ve had some real fears about this, haven’t you?

Jonna Hartman:  

Yes, I have. You see things on Facebook support groups where somebody has progressed after 12 years or 17 years or 10 years and it just gives you some concern, so I think about it some. But then I also try to just live my life every day and enjoy every day and not really stress all the time about the conversion.

I’m now on peinteferon alfa-2a (Pegasys), and I just went for blood work after four-and-a-half weeks, and I had really good results. It took the higher dose, but I was so happy that my counts are starting to go down, so I kind of feel like I’m doing something about it, now. I’m on a drug that could possibly prevent me from progressing—at least, that’s what I think. So I’m excited about my results yesterday and—and hopefully what Pegasys is going to do for me.

Andrew Schorr:  

Well, good for you. One—one thing I wanted to just recall for you. You mentioned that you heard a presentation at one point and saw a slide that kind of scared you. What was that?

Jonna Hartman:  

I was in an MPN event in my community and my doctor, actually—Dr. Elliott Winton—was speaking at this little, informal event and he had slide and the slide was showing medium life expectancies and PV was 14 years, so—you had seen numbers like that before in your research and so, when I went in for a doctor’s appointment, I said “What about the slide you used? It says 14 years.” And he was like “I probably shouldn’t have used that slide.” And I’m like “No, you shouldn’t use that slide because it’s very scary for us that have the disease when we see things that say 15 years, 20 years—I’m young. I want to see my daughter get married and have grandkids.”

Andrew Schorr:  

Okay, well, the title of this program is “Allaying Fears.” Each of you have had it. I’ve had it, to, as a myelofibrosis patient. And taking action. So, both of you have taken action by connecting with specialists. So we have one with us, Dr. Heaney. Dr. Heaney, tell us, what do we know about progression, because people know, if it goes—blows through myelofibrosis, you could even have acute leukemia, and maybe there are some medicines changing for that now, but it’s very scary. So what do you tell patients today on what we know about progression and how variable it is?

Dr. Heaney:         

So, I think the truth is that, most patients with polycythemia vera and essential thrombocythemia don’t progress. In fact, the progression rate to myelofibrosis is less than ten percent. So it’s—it’s certainly a concern and, as a physician, that’s my job to watch for that, but most patients don’t go on to progress. And so, there are other complications that can come with the disease and having a blood clot is probably the most common.

So that’s—that’s something that we can sometimes try to reduce the risk of and all those things are part of managing the disease in total. It’s—progression is scary and, you’re right, if you go to myelofibrosis, then there is that fear that there’s another layer of progression beyond that, but—but fortunately that’s not the case for most people.

Andrew Schorr:  

Okay. So, we’re not necessarily on a freight train from ET through PV to MF to acute leukemia, so that’s good to know. So then it sounds like monitoring and the proper treatment for the condition you have. So with these ladies with PV then, what would be the monitoring you would be doing to lower their risk of complications from PV, since we have two ladies with it.

Dr. Heaney:         

So the—the most common risk of PV is thrombosis or blood clots and we think that, over a patient’s lifetime, somewhere between a quarter and a third of patients with diseases like polycythemia Vera and essential thrombocythemia may have blood clots. I—I think one of the things that’s really critical to remember and—and I know that you mentioned the—the life expectancy slide that was scary, but all of the data that we have right now is already 15 to 20 years old, and this is a disease that extends over such a long period of time that the really knowing what’s modern and now is extremely challenging for—for us as physicians.

And so we do know that there is an increased risk of thrombosis and we think that we can reduce that risk by giving medicines like aspirin in low dose, by controlling the hematocrit to keep it 45 and less, and in some cases, using what we call cytoreductive medicines, like hydroxyurea and pegylated interferon and possibly other medicines like ruxolitinib or Jakafi.

Andrew Schorr:  

So one of the things we have talked about before, Dr. Heaney, particularly related to myelofibrosis and some polycythemia vera, is genetic mutations that may be fueling your condition. Does that apply that in PV where you would be treating it differently based on that?

Dr. Heaney:         

Not so much for PV. We think that, for patients for myelofibrosis and essential thrombocythemia, that patients who have the JAK2 mutation have a higher risk of thrombosis than patients who have other mutations, but nearly everyone with polycythemia vera has the JAK2 mutation, so that kind of makes everyone level, in that regard. And so there are other components to risk mitigation in that setting. We know that patients who smoke or have diabetes or high blood pressure have higher risks of thrombosis and so, working to reduce those—those risks and there’s certainly a value to reducing those risks for—for other diseases, too.

Andrew Schorr:  

So, Ann, you went many years with just aspirin, I think, and I’m not sure

Ann Zielinski:       

Yes, and phlebotomy.

Andrew Schorr:  

And phlebotomy and then it turned out pegasys interferon was a good idea for you. And it’s done well. So what was going on that made the switch?

Ann Zielinski:       

What made the switch was that my spleen was so big, I couldn’t bend over to garden and, next time I saw my doctor, I said “We can’t go on like this. My spleen is way too large.” It was 21 centimeters under the rib, which is all the way down to the navel. And he said “I agree. Let’s do something.” And that was the—he left the practice the next week. So the last thing he did for me was to make sure that I was cleared to do—to use Pegasys.

Andrew Schorr:  

And it’s worked well.

Ann Zielinski:       

And it’s worked great.

Andrew Schorr:  

So, Dr. Heaney, let’s talk about that. Is—how do you know—Jonna is on Pegasys, as well. Some people may be on aspirin, like she was, etcetera. How do you know when to make a switch? What are you looking for?

Dr. Heaney:         

So for me, for patients with polycythemia vera, it’s a balance between trying to maintain them on phlebotomy versus using something to bring the counts down. One of the—we can always reduce the hematocrit with phlebotomy, but there can be a danger if patients become overly iron-deficient, because you need iron for other bodily processes.

So—I—usually, if patients really become iron-deficient, in order to control the hematocrit, that’s the time when, I think that—that we need to use some cytoreductive medicine. And, at other times, just as Ann was saying, if the spleen gets to be too big and starts to compromise activities of daily living, then that’s another time when—than just taking red blood cells out won’t control that and we need to use something reduces the cell count.

Andrew Schorr:  

And, Jonna, you’ve had concern about low iron, right? I mean, you’ve had some fatigue, and low iron’s been an issue for you, right?

Jonna Hartman:  

Yes, it has. I have a lot of fatigue and I believe that the low iron is really what’s causing it. So, hopefully, when my counts get under control, I might be able to get my iron back up. Pegasys—Pegasys, for me, was an interesting journey. My doctor actually wanted to start it about two years ago, and I really didn’t want to, just yet. And I think the main reason he wanted me to start it maybe was because I was younger progression. I believe that he was trying to maybe prevent progression and I actually traveled—I didn’t really want to—I was resistant and I actually traveled to get a second opinion on starting the drug and that doctor disagree.

So I didn’t start it right away, and I actually waited for another year-and-a-half and, finally, my counts got to the point where I did something: my platelets were too high, my white blood cells were too high and other numbers were too high. So I still am hoping that, once my numbers get under control and I can actually add some iron—my ferritin is very, very low. It’s like a three. So, I’m hoping that, when I get some iron back in my system, I will feel better.

Andrew Schorr:  

I hope so, too. That sounds reasonable, Dr. Heaney?

Dr. Heaney:         

It’s a—iron is kind of one of the fuels for the red cell production in patients with polycythemia, so it’s a—it’s a delicate balance that the patients run between being iron deficient to help control the hematocrit but, as you point out, it’s not just hematocrit, it’s also the platelet count and the white blood cell count. We think that, when the platelet count gets above a million, that—that that increases the risk of blood clots. And we think that the white count also plays a role in—in increasing the risk of blood clots, although those data are a little bit west of definitive.

Andrew Schorr:  

All right. Let’s make sure we cover our other MPNs, as well. So ET, essential thrombocythemia, and I think—I don’t know if it was you, Jonna, or you, Ann, originally, they thought it was ET. I can’t remember. But, at any rate, what about their monitoring for progression, Mark? What about for people with ET?

Dr. Heaney:         

It’s the same kind of thing that—the biggest risk for ET patients is thrombosis and so making sure that the platelet count stays under a million, taking drugs like aspirin, we think can help. And also maintaining active lifestyle, reducing smoking, blood pressure, cholesterol, all those we think play a role in—in reducing some of the risks of the disease. I think, as individuals and as physicians we like to put things in boxes and, unfortunately, these diseases are part of the family and they don’t always stay in the box.

And I’ve had a number of patients who started out with normal hemoglobin, even anemic and high platelet counts, And then, over time, developed polycythemia, so the diseases don’t always stay the same and sometimes we use terms like masked polycythemia to describe those patients but I—but I think just as patients with both ET and polycythemia can progress to myelofibrosis, these are diseases that are really part of a disease continuum.

And I know Ann mentioned that you thought you were on the verge of myelofibrosis and were pulled back by—by the interferon and I—I think that that’s not necessarily a wrong way of looking at it, that this is really part of this—this continuum and you can move both ways on that scale.

Andrew Schorr:  

All right, let’s talk for friends, like me, with myelofibrosis. So I get monthly blood tests. We’re looking at the LEA—LDH. I’m on ruxolitinib. They monitored my platelet count pretty well. I’ve had another condition, chronic lymphocytic leukemia, that playing a role, so it’s even more complicated with me. So, what about, with myelofibrosis, I know there’s some people live in fear and with, some of the older slides that have been put up before we had some of the treatments that we have now, what’s the longevity of that, and I’m happy to say I’ve been on the same medicine for six years. It continues to work. So what about progression there, Dr. Heaney?

Dr. Heaney:         

There—there certainly is a risk of  progression and I—and I think that sometimes we get a little bit focused on the idea of progression to another condition without also acknowledging that the disease, themselves, can cause problems and there are patients with myelofibrosis who aren’t able to produce enough white blood cells or platelets or hemoglobin and can have complications, even life-threatening complications, from those low blood counts and the risk of infection.

So it’s not all about progression, but we do think that medicines like ruxolitinib have influenced that natural history of the disease for many patients and have—I think there’s a considerable amount of data now to say that it really slows the rate of progression and improves overall survival.

Andrew Schorr:  

And I know, of course, and you mentioned it for yourself, Ann, about the size of your spleen. Mine never got that big but I will say that, in the case of—for me, ruxolitinib, the spring, it is—the spleen is shrunk and I actually had a chronic lymphocytic leukemia doctor visit this morning and he just could barely find my spleen, so which—which disease was doing it, but I know that’s something you monitor in myelofibrosis, as well, right, Dr. Heaney? Is the spleen a problem?

Dr. Heaney:         

The large spleen can cause problems for a lot of patients, if it gets to be too big. It doesn’t always get to be so big, but it’s hard to bend. But when it’s smaller than that, it can press up against the stomach—the spleen sits right in front of the stomach—and can prevent people from eating full meals because, as soon as something goes into the stomach, the spleen is pressing up against it and it makes them feel like they’re full after they’ve had just a little bit to eat and that inability to eat a full meal can really cause a lot of weight loss and prevent people from getting adequate nutrition.

Andrew Schorr:  

So what about monitoring, then is—how do you decide how long—how do you decide, when somebody comes to see you, when you want them to come back?

Dr. Heaney:         

So for people like Jonna and Ann, I typically—who are on a stable regimen and doing well, I usually see them about every three months. And a patient’s whose disease looks like it’s changing, when they seem like they need phlebotomies a little more often, I usually shorten that up, somewhere between one month and two months. And, every visit, my patient comes in, they lie flat, I press their—their stomachs. I take out my tape measure, I measure their spleen, and—and when that changes, that—that can also precipitate a change in the frequency of visits, if I think there might be some hint that—that the disease might be moving.

Andrew Schorr:  

Let’s talk about communication for a minute, because we’re in partnership and this is a partners program. So, Jonna, do you go in with a list of questions for Dr. Winton, or how do you—because, let’s face it, you went through a lot of worry, you have a daughter who’s in college, you want to live a long time, you want to deal with this fatigue? So how do you communicate with your doctor so you feel more confident?

Jonna Hartman:  

Well, if I’m on these Facebook support pages or if I go to the Patient Power website and I watch videos or I read articles, I write down any questions that may be concerning, about PV, about progression, about treatment, and I save those questions for my next doctor’s appointment and then, when I go in, Dr. Winton is always willing to take the time to answer any questions and concerns that I have and he’s—he’s sometimes put my mind at ease. So I just save up a list of questions between my appointments and then I keep that list and he and I talk about it when I go in.

Andrew Schorr:  

Sounds like a great plan. How about you, Ann. You’ve had a longer journey, and you’ve had some changes and doctor changes along the way, too.

Ann Zielinski:       

I do write down a list. Luckily, Dr. Stein is real good about emailing questions, so if there’s something odd on my blood test that are ordered by my local hem-onc, I can send him a quick note and I usually have a response within an hour. So we have the opportunity to do that. Now, I will, in September, switch over to seeing him every three months and that relays—allays all my fears.

Andrew Schorr:  

That’s great. So, Dr. Heaney, you have people who may walk in, who are newly diagnosed. You’re diagnosed with one of these conditions you’ve never heard of. Maybe you read older stuff that talks about a progression, like we’ve been talking about and older stats on life expectancy and you’re terrified and, I know you probably don’t use these words to tell them to “chill out,” but how do you calm people? How do you allay fears for the new patients, family members who come in today.

Dr. Heaney:         

So I think part of it is—is putting the disease in perspective and I—and—I think, for most patients, this is a disease that’ll last decades and sometimes many decades, and so I usually try to frame it that way. At the same time, I think it’s important for any patient with diseases in this family to know that it has the potential to be a serious disease and—and that’s one of the ways that they partner with me  that—that when things changes, they may notice a change or their family members may notice a change before I would, on the next visit and so having them spy in that way and—and find another way of—of getting that kind of information can be really helpful.

But I think a lot of it is just giving people the information that they know and also letting them know that what we know today is—is probably not necessarily applicable for the life spans of our patients. Most of those data, as I mentioned earlier, are so old that—that they may not really be applicable for right now with medicines who we have the potential to be disease-modifying.

Andrew Schorr:  

You have a lab, as well. My doctor, Dr. Catriona Jamieson has a lab, and she’s dividing her time, and there could be something in that lab that’s going to pop for me or any of us or from your lab, going forward. And we wish you Godspeed with that, by the way. So, Ann, you’ve—you’ve found it important to speak up for yourself. Like, when you knew that you were having trouble gardening and bending over, ding ding ding, got to talk about it. In other words, what would you say to people to speak up for themselves when they’re noticing something different in their body?

Ann Zielinski:       

With this disease and how few doctors actually run into someone with polycythemia and how few hematology-oncology doctors at local hospitals are actually hematologists, you have to learn to speak up for yourself from day one. If you have a question, as kit. Don’t say “Oh, if I don’t ask, it’ll be okay.” If you see a red cell that you don’t understand. If you see something on a report on the differential or enzymes, if they’re doing a complete  metabolic panel, ask, always ask. You’ve got to advocate yourself. And, once you do and you learn the nomenclature, it’ll be so much easier for you to also stay up on the current literature, which helps.

Andrew Schorr:  

Good points. Now, Jonna, I want to go back to something you said. You’re involved in Facebook groups  and there’s some for PV and even people on interferon, for example. How do you filter, if you will, so that what is happening with one patient that may be more serious doesn’t freak you out. In other words—or vice versa—how do you see—how do you filter what somebody else is saying and say “Well, I’m going to take that as information, but I’m going to talk with my doctor about my situation.” You know what I mean?

Jonna Hartman:  

That can be a problem with some of the support groups because you read, like I said, somebody that has progressed after ten years and you’re concerned. But I try to tell myself that everybody’s experience is—with the disease is different and their disease course is different and their treatments are different and we all react differently. So, yes, I think about it but then, I also just try to stay positive and just say “Okay, because they went through that, that doesn’t mean that I’m going to go through that.” You can get some information on the support group pages. They will share articles and information where it’s vital and you learn some—some really good things.

Andrew Schorr:  

Years ago, I wrote a book called The Web-savvy Patient, and some of it was echoing what you’ve said about preparing for a visit, connecting with a specialist, and being empowered. But it was also filtering, sometimes, some things well-meaning people may say that might not apply to your situation. So, Dr. Heaney, what do you tell people so that they can get, if you will, personalized medicine and—and understand that their journey may be different from someone else’s?

Dr. Heaney:         

So it’s a little bit – you’re right, you can get some information from friends and that can be really helpful because they’re—they’re trusted and, whether they’re real face-to-face friends or Facebook friends, that’s all potentially valuable information. There’s something called anchoring bias, where we take one particular thing and that thing has more weight than other—that—than the larger body of knowledge and that’s a danger that we all face. As a—as a doctor, what happened to my last patient. That’s something that sometimes has greater weight than what happened to all of my patients over time and so it’s—so we have to sometimes detach our ideas from particular events and—and really work, sometimes, to put everything into perspective.

Andrew Schorr:  

So we got a scientific approach to help see our own situation, hopefully in a more positive way. Well, as we wrap up, first I’ll ask you, Dr. Heaney, are you encouraged? You said there may be things in the lab that are going to make a big difference for us in our journey with these conditions. Are you encouraged when you look at these MPNs?

Dr. Heaney:         

I really am. Having taken care of patients with MPNs for a quarter of a century, the—the amount of progress we’ve made in the last five years, outstrips the 20 years before that and I’m really hopeful that the next five years will—will outstrip everything that we’ve seen so far. And, as we understand the biology of these diseases much better, I—I am certain that we’re going to have better treatment approaches. The other thing that I would say right now, though, is that the medicines that we’ve had for the last five years really haven’t started to register yet on—on the—the expectations for our patients today.

And I think there’s a lot of hope that medicines like Pegasys may have disease-altering activity. I think a lot of the older data was influenced by using drugs that we don’t use anymore like—like radioactive phosphorus, that we know increase—now, that increases the risk of acute leukemia. And I think, as—as those older data kind of fade away, the perception that polycythemia Vera may be a bad disease is – is something that—that may end up being re-evaluated.

Andrew Schorr:  

That’s great news. So, Ann, you’ve been at this for—since 2001. How are you feeling, now? You’re gardening, right? You’re retired…

Ann Zielinski:       

I’m gardening. I exercise three days a week. I go to a personal trainer, another day a week. Am I fatigued in the afternoon and evening? Yes, I am. But I’m not going to stop being who I am, so I just plan my schedule and—and go at it from there.

Andrew Schorr:  

Well, we wish you all the best. And, last word to you, Jonna, down in Atlanta. So you’ve had—you’ve been working through this since 2015, I believe. So, three years as we record this. Are you feeling more positive, now?

Jonna Hartman:  

I’m really excited about my results with Pegasys. Like I said, I’m hoping that, once my counts get under control, I—I can add some iron back to my body and, hopefully, the fatigue will lessen. I—I still am able to accomplish a lot. I still work full-time. Just recently off of my hours. But I travel a lot. My daughter plays college volleyball, so I’m always there to support her and I stay busy. I’m hoping that my exercise schedule can improve. I work all day and, when I get home, I’m a little tired, so I’m—I don’t go to the gym but, I’m—in my new capacity at Rooms to Go, I’m hoping that I can start some exercise.

Andrew Schorr:  

Well, all the best to you. And I’ll just say, for our myelofibrosis friends, look, I went running. I have a new Fitbit watch. I found out my pace was only 12 minutes. Pretty slow. But I did it and I go to the gym and I’m leading a full life and I get to this with all of you. So—and the medicine I’m taking, in this case, ruxolitinib and Jakafi, has been working for me and I hope it works for a long time and the spleen is small. So I think there’s a lot to be very hopeful for and so our goal was to help people allay their fears and understand this whole issue of progression. I think we’ve done it. So, Jonna in Atlanta, thank you so much for being with us, Jonna.

Jonna Hartman:  

Thank you.

Andrew Schorr:  

And Ann, in Illinois, all the best to you. Keep gardening, okay?

Ann Zielinski:       

Alright. Thank you so much.

Andrew Schorr:  

And I’m going to come to you for green thumb instruction. I could use…

Ann Zielinski:       

…you do that!

Andrew Schorr:  

I could use it. And Dr. Mark Heaney at Columbia, in New York, thanks for being with us, once again.

Dr. Heaney:         

You’re very welcome, anytime.

Andrew Schorr:  

Andrew Schorr here with Patient Power. I want to thank Insight Corporation for sponsoring this educational activity. I wish you all the best and remind you that knowledge can be the best medicine at 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.