How Getting to the Right MPN Specialist Turned One Man’s Life (and Prognosis) Around

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Topics include: Patient Stories

A 71-year-old myeloproliferative neoplasm (MPN) patient Nelson Patz was initially treated for Lyme disease and experienced painful, severe side effects but today he feels stronger than ever. How did Nelson get to the care he needed? How did he remain hopeful despite day-to-day discomfort and dwindling health? Nelson walks us through the twists and turns of his journey through misdiagnosis, worsening symptoms and finally receiving a treatment suitable for his condition. MPN experts, Dr. Brandon McMahon and Lindsey Lyle, from the University of Colorado Anschutz Medical Campus, also share reasons why misdiagnosis may occur, and the role financial assistance plays in getting to the right care. Watch now to find out more. 

Sponsored by Incyte Corporation. Produced in Partnership with the University of Colorado Anschutz Medical Campus.

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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:

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?

Nelson Patz:                

I feel actually amazing. At 71, I feel, when I close my eyes, that I’m in my 40s. 

Andrew Schorr:          

Okay. All right. Now… 

Nelson Patz:

…when I close my eyes. 

Andrew Schorr:

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 wanna 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?

Nelson Patz:                

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 lifeforce—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’s Disease. He said that, “The blood test really wasn’t definitive, but we’re gonna give you the high dose of antibiotics anyway.” 

Andrew Schorr:          

Did that help?

Nelson Patz:                

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...

Andrew Schorr:          

Hold on for a second, I wanna 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?

Lindsey Lyle:              

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. 

Andrew Schorr:          

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.

Nelson Patz:                

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 10 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. 

Andrew Schorr:          

Oh, my.

Nelson Patz:                

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 lifespan.” 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. 

Andrew Schorr:          

Didn’t use the “C” word.

Nelson Patz:                

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.”  

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.  

Andrew Schorr:          

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?

Nelson Patz:                

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 ruxolitinib (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. 

Andrew Schorr:          

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?

Nelson Patz:                

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.”

Andrew Schorr:          

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? 

Dr. McMahon:            

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.

Nelson Patz:                

It went from $3,600.00 a month, to $10 a month co-pay.

Andrew Schorr:          

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?

Nelson Patz:                

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 $3,600.00 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.

Andrew Schorr:          

So, you’ve been a healthcare professional, what would you say, maybe gratitude, about medical science? I don’t know who developed that drug, or some of the other drugs we’re talking about, but if you could talk to one of those scientists who worked on it, that made a difference for you, what would you say?

Nelson Patz:                

I’m just so grateful, because I don’t think I’d be alive today. And when I was resigned, when I first got here. I was resigned to, whatever it took, I didn’t want to go through the whatever it took, but I’m gonna do it, because I love my wife and my kids… and my dog. 

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 August 13, 2018