Published on May 9, 2018
The recent myeloproliferative neoplasm (MPN) town meeting in partnership with the University of Colorado Anschutz Medical Campus featured renowned experts and clinicians and a well-informed patient panel sharing advice for living well with an MPN. Tune in now to hear MPN experts, a social worker, and a dietitian discussing the management of symptoms and side effects of essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF). You’ll also learn about the resources for coping with the emotional side of an MPN diagnosis, diet and exercise tips as well as responses to a variety of audience questions.
Produced in partnership with the University of Colorado Anschutz Medical Campus. Sponsored by Incyte Corporation.
Transcript | Session 2 Replay - Understanding MPNs: Accessing the Best Care & Treatment Options
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.
And welcome back from Aurora, Colorado near Denver. I’m Andrew Schorr. We’re continuing our discussion—worldwide discussion—with the help of the folks here at CU Anschutz, the big medical center here, and our friends who’ve come from MD Anderson, and people who’ve flown in from Florida, like you heard, and all over. We’re gonna continue our discussion now, as we really talk about living with an MPN.
Remember you can send your questions if you’re watching on TV, if you will. MPN@patientpower.info. Don’t make it too personal, because we want it to benefit everybody. And our medical practitioners here are not gonna say, “Oh, what you did in your question, you should do this.” We’re gonna generalize it more, but you really need to send in your question. Let’s have an interactive audience.
For those of you in the room, we’ll be taking your questions after a while, so write them down. We’ll have microphones in the room where you can pass it up front and someone can ask it for you. Okay. So, as I said early on, I was diagnosed in 2011 with something I’d never heard of myelofibrosis, scarring in the bone marrow. I am fortunate that there became an approved medicine, ruxolitinib, or Jakafi, and I’ve been on it since then. I’ve been living well, and I go to the gym.
Most days I run with my wife Esther, and I bike and I’m living, I think a pretty full life. And I’m very grateful for a number of things, the scientists who developed it, the researchers—we have researchers with us here—and I’m very grateful for the patients who are in clinical trials, including my friend Ed Harris down in Houston, who was like patient number one, or something. So, really for the people who have been in clinical trials, my hat is off to them.
If you benefit from an approved therapy, or others may be coming, somebody was in trials that led to that approval. Okay, so we really owe them a debt of thanks, and you should consider being in a clinical trial perhaps, too. Okay.
So, now I want you to meet two patients and also their providers, because we talked about the relationship between a patient and their medical professional, in itself, and a whole team, that works with them, where you develop that trust, okay? So, this gentleman is Nelson Patz, right? And Nelson now lives in Colorado. Nelson’s 71, and how do you feel today?
I feel actually amazing. At 71, I feel, when I close my eyes, that I’m in my 40s.
Okay. All right. Now…
When I close my eyes.
…this is a family story, and I want you, your wife Mary Ann, to stand up. There’s Mary Ann, and daughter Molly, stand up, and Julia stand up. And I just want to tell a little bit of the story, and then Nelson’s gonna tell us some more. So, they’re here in Colorado now. Not all of them were in Colorado before. They came to Colorado in part, or to get altogether, because Nelson thought he was dying, and they lived back East.
And it was very despondent living with an MPN, and he thought this was the sunset of years. He wanted to be close to his daughters, his wife came. And they’ve been a tremendous support. The good news is, you’re gonna hear is, Nelson is not dying now. And you just heard how well he is. Thank you so much for being wonderful care partners. Thank you, ladies.
Okay, Nelson I’m gonna sit down, but we’re gonna get your story now, and it has a lot of twists and turns, but first of all, what symptoms did you have where you knew something wasn’t well? Because you, actually your healthcare professional, you were doing acupuncture for years. So, what problem did you have?
Well, I was exhausted, and I had aches and pains in all my joints. I could feel pain, and that would move around my body and it would last two or three days. I was just curious watching it now, with an acupuncture background, they talk about chi energy—the life force—and that it’ll flow, and it’ll move.
And I said, “Okay, something’s stuck here.” But it would resolve itself. It would move along, and I thought I had Lyme disease because my two dogs had Lyme disease, and I had had picked ticks off myself. I used to live on Cape Cod, Massachusetts, which is very high in Lyme disease.
So, I went to my primary care, and I told him what was going on, and he treated me for Lyme disease. He said that, “The blood test really wasn’t definitive, but we’re gonna give you the high dose of antibiotics anyway.”
Did that help?
No. It really messed me up. I ended up with irritable bowel syndrome. I ended up with a yeast infection. I end up with inflamed bladder. So much so, that I went to a urologist and they put a device to look at my bladder…
…hold on for a second, I want to ask Lindsey a question. So, Lindsey, you developed fatigue, that could be like one of 20 different, 100 different things, and so somebody goes to their primary care doctor. Many primary care doctors never see an MPN, right?
Correct, yes. Primary care physicians, right, they see everything. And so most often fatigue is not because you have an MPN. If you’re going to your primary care, and so the first step is not to order a CBC, essentially. I would probably be a bad primary care provider, because I would be getting blood tests on everyone.
You know, but that’s the first thing that they do, and so really, common things would happen more commonly. So, in Nelson’s case, he’s been around ticks, and he was having symptoms of this, perhaps that wasn’t and unreasonable treatment. But right, primary care physicians don’t generally see a lot of MPNs.
Right. Now, let’s just mention, Esther and I—my wife Esther—used to work on a medical show and it used to be where somebody, a patient, on TV said they had a symptom, and then we flash on the screen, they said they have a headache—could be a brain tumor. Well, it probably wasn’t. Might have been too much coffee, too. So, remember, don’t always jump to the worst or the most rare, and that’s certainly what was going on here.
You may as well have had ticks. The point is, you went on, you were not getting well, and you then started seeing other doctors, right, trying to figure out what was going on.
Well, I was having terrible pain from the antibiotics, and after three weeks I told my doctor, “I’m getting of this.” Now, at the time the only thing I was taking was 81mg of aspirin a day. I’ve been doing that for like ten years. And I started having pain in my kidneys. It felt like I was getting punched in the kidneys.
And once, perhaps, I had a kidney stone. I was hoping I’d have a kidney stone, because when I started to urinate, the urine was starting to get pink, and there would be these little tiny blobs that would come out in the urine. And they were like little blood clots.
So, I noticed that certain foods aggravated the situation. If I had coffee, it made it worse. If I exercised too much—I like to jog—it made it worse. The bouncing around, et cetera. So, when I went back to my primary care and I told him I’ve gotta get off these antibiotics, but also the aspirin. I said, “I think it might be causing bleeding.”
I mean I was looking desperately myself trying to see what I could discover on my own. He said, “Well, I want you to go get the bloodwork done.” And he said, “You have some elevated platelet counts, and it’s probably nothing, but let’s go done and see an oncologist.” So, I went to the oncologist on Cape Cod, and he identified the JAK2 defective gene.
And he said, “Okay, this is what you’ve got.” He said—and he wouldn’t look me in the eye when he said, you know. And he said basically, “We have a medication we can give you, the hydroxyurea (Hydrea) for sickle-cell. It’s been around a long time.” And I said, “What are the side effects,” because I’m in the professional field. He said, “There aren’t any.” And I said, “What do you mean, there aren’t any? It’s a drug.”
And he said, “No, it’s been around for a long time. It’s very safe, and you’ll live a normal life span.” So, I said, “Oh, okay. That sounds good to me.” So, when we went to pick up the hydroxyurea at the pharmacy, I see a skull, crossbones, “Don’t touch the container, wear rubber gloves.” And I was like, “Oh, my God. This is a cancer drug. This is chemotherapy.” I didn’t know that. He didn’t tell me that.
Didn’t use the “C” word.
Didn’t use the “C” word. Yeah. So, I started on hydroxyurea, and my blood plate count was over a million. And so, we had to knock that down. When I moved then—I got my old job back. It’s a long story—back in Virginia, where I was an acupuncturist treating 80-90 people a week. So, I thought, “Well, it takes a lot of energy.”
God bless this guy. You really listen to people. And to empathize with your situation. So, as an acupuncturist, I’ve been doing it for almost 30 years. I’ve learned over time just to be quiet inside myself and listen. And there’s something very healing in that listening and empathizing with what’s going on with the person. So, I thought, “Well, it took a lot of energy to do that all-day long.”
So, I thought maybe I was just overdoing it, and the more emotional I got, or allowed myself to feel the other people’s pain, the more energy it took from me. So, I had to find that balance where I was listening, but I was listening objectively and at the same time caring.
So, I want to skip ahead a little bit, because you eventually went to one of our top cancer centers, Dana-Farber Cancer Institute in New England, in Boston, saw other doctors, but the point is, you were getting really sick.
You were not doing well, and as I mentioned at the outset, you came out here to Colorado thinking this was the end. I mean, how bad did you feel, and how depressed maybe—what was your mental state and your physical state when you decided to come out here?
My physical state up until about two months before I came out here, was actually—it was pretty good. I was on hydroxyurea, and my platelet numbers were coming down to 450,000, but the white blood cell count was really going up, over the roof. It was over 100,000 when I saw Dr. McMahon.
And so, my doctor in Norfolk, Virginia said, “I’m gonna take you off the hydroxyurea.” He said, “I’m gonna get you on this Jakafi.” And my doctor on Cape Cod said, that eventually he’d like for me to go on the Jakafi also, because the hydroxyurea could lead to some complications.
So, I was all for it, and with the side effects that I had with the bleeding, I was concerned the hydroxyurea was adding to the bleeding. There was actually a time when I was in Virginia taking the hydroxyurea that I had such pain in my kidneys, I called my doctor up, my oncologist, and he said, “Go to the emergency room.”
Well, what I learned was, I didn’t think they were going to do anything for me at the emergency room, so what I discovered on my own, was that when I walked it helped move things along, and if I could pass that blood clot—as soon as the blood clot passed, all the pain was gone.
Okay, but you – They were prescribing ruxolitinib, or Jakafi—so the generic name, ruxolitinib, for Jakafi, is the trade name. Or in Europe, Jakafi or Jakavi. I think they call it. It can be confusing – but there was a problem. You saw, based on your situation, you couldn’t afford it with the insurance you had, right?
Oh, definitely. My doctor on Cape Cod said, “You have to do the hydroxyurea. If you have complications, then I can recommend Jakafi for you.” And I said, “Okay, great.” So, I saw him for about six months, or eight months, and then he was going to put me on Jakafi.
He said somebody at the pharmacy could get me that at a reduced rate, because I think the co-pay was $3,600.00 a month. That was the co-pay. Instead of putting me on Jakafi, he said, “Well, you’re moving to Virginia, we’ll let the oncologist down there oversee your healthcare.”
But, I just want to move along, but it didn’t happen, right? You didn’t make that connection.
You were getting sicker. You came out here with your family, but you connected with this man, to your right, Dr. McMahon, and MPN specialist. You did get on the drug, and Dr. McMahon, you did help with some financial assistance programs that made it doable for Nelson, right?
There was a lot of work involved, and social work was a big help with that, and pharmacy was a big help with that. I’d called on my colleagues that have much more expertise on the financial side of things, but they were able to finally get the drug.
It went from $3,600 a month, to $10 a month co-pay.
Wow. So, we’re gonna talk in a few minutes as we bring in our oncology social worker. We’re gonna talk about also, finding financial assistance programs. We talked about the years of development that go into bringing a drug to market. Literally, hundreds of millions of dollars sometimes. There’s been tremendous investment, then the drugs are very expensive, and you can image with myelofibrosis, polycythemia vera, essential thrombocythemia, these are rare conditions, right?
So, when you divide up all the patients, and you say, “Well, we need to make our investment back. How do we do that?” Right? So, that’s the problem in drug costs today, but there are assistance programs available to many people. We’ll talk about that.
So, getting to the right provider here, and getting on the right drug, Nelson, how did that transform your situation? How low were you when you got here, and how high are you now?
Yeah, I was—I really thought I was dying. It was like when my doctor in Norfolk took me off Hydroxyurea, after a couple weeks, because I was without any medication whatsoever, for six weeks. And he wouldn’t return my calls. I mean, I called him four times and he gave me his quote “personal number”. Never returned my call.
He thought I was going to go on Jakafi, or Jakafi. And the pharmacy representative called me up and wanted to know if I needed any assistance with my $3,600 a month. I said, “Yes.” She said, “Well, you make too much money. After we talked about it, you don’t qualify.” And I said, “Well, then I can’t take it.” And she goes, “Well, if there’s anything else we can do for you, let us know.” For real, you know?
So, anyway, when I was off the medication, after about two or three weeks, lots of bad symptoms came up. I mean, lots. It was very difficult for me to walk. I felt like I was on a cushion, like a three-inch cushion on the pads of my feet, just to walk.
So, okay. That’s how low. And I know you had trouble getting out of bed.
Yes. I was able to get out of bed because I have a certain mindset. I’m a martial artist. I specialized in jiu-jitsu and wrestling, and so I learned that, for one thing, not to take counsel of your fears, and just don’t pay attention to negativity, but move on and ride out the moment because energy comes in waves. It comes up and it goes down, etcetera. And so, I learned just to be patient, and patience is one of the things I’m evolving, as you ask my wife. She’ll tell you, I’m still evolving.
So, you connected with Dr. McMahon. You went on ruxolitinib. Now again, everybody is different. How rapidly did you see a change?
I think it took about a week for the pharmacy to send the ruxolitinib.
But after you started taking it…
…I took it and I’m living with my daughters, and I’m lying in bed and the medicine came to my house, and I was like, I couldn’t wait to take it. I just felt, “Okay, good. There’s hope here.” Especially after I saw Dr. McMahon. He said, “There’s things we can do to help you feel better and this Jakafi, there’s a lot of research out there, and it’s gonna help this, especially with the spleen.”
My spleen was so swollen that I went to the emergency room two or three times when I first got here because I couldn’t breathe. I couldn’t get enough air coming from Virginia, but my spleen was so…
How quickly did this change?