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The Importance of a Second Opinion

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Published on September 30, 2021

Waldenstrom Patient Shares How a Second Opinion Saved Him

Co-founder of Patient Power Andrew Schorr meets with Joe Schiro, a nine-year Waldenstrom macroglobulinemia patient, who was first misdiagnosed with chronic lymphocytic leukemia. Together, they discuss the importance of getting a second opinion after a diagnosis and seeing a specialist.


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Transcript | The Importance of a Second Opinion

Andrew Schorr:
Hello and welcome to Patient Power. I'm Andrew Schorr in San Diego, California. Joining me from clear across the country, Oswego, New York, near Syracuse, New York, upstate is Joe Schiro. We're talking about Waldenstrom's. Joe, welcome to Patient Power.

Joe Schiro:
Thank you for having me, Andrew.

Andrew Schorr:
Joe, you've had kind of a windy road and we want to explain that to other patients to get to better treatment and the right accurate diagnosis. So, I think it takes us back to 2012 when you had a new primary care doctor, had blood testing, and something was out of whack, right?

Joe Schiro:
Yes.

Andrew Schorr:
You go to a hematologist, and they say it's chronic lymphocytic leukemia. Now you'd probably never heard of that, right?

Joe Schiro:
I never have, no, I never had until that point.

Andrew Schorr:
And you were, you weren't feeling great, right?

What Symptoms Did You Have at the Time of Diagnosis?

Joe Schiro:
Well, at that stage, I was just feeling more tired than I should be at that age. And, for how active that I was all my life. And because of the nature of the job that I was in, I was in construction, so I was a pretty strong guy, pretty healthy. And I was just not feeling quite right. But it didn't really kick in until 2015.

Andrew Schorr:
So the treatment for some people with this chronic lymphocytic leukemia is to watch and wait.

Joe Schiro:
Watch and wait.

Andrew Schorr:
And see what happens. But as you said, 2015, you were really fatigued, right? And I understand that you were really tired.

Joe Schiro:
I was sleeping 16 to 20 hours a day. I had absolutely zero energy. I had a swollen, well, I didn't know what it was at the time, but further down the road, we figured out that I had a swollen spleen. It was hurting in that area. I can actually even feel it. It was pretty enlarged. And I always wondered why from a certain point on before treatment, I felt like something was wrong with my armpits.

Andrew Schorr:
Yes.

Joe Schiro:
I've never experienced anything like that, but I couldn't put my thumb on it. But I always kept raising my arms all the time, thinking that it was just an adjustment I had to make or something. But what was actually going on was my lymph nodes were swollen in my arm-

Andrew Schorr:
Swollen lymph nodes, sure. Well that certainly, now, that can sound like CLL, but you decided to go to a well-recognized cancer center. The Wilmot Cancer Center, University of Rochester, another city upstate. And they said, no, no, you don't have CLL. Right?

What Was the Result of Getting a Second Opinion?

Joe Schiro:
Right. Something told me to get a second opinion before I started with chemotherapy, because I got that sick, that I needed treatment. And I was going to start chemotherapy, but I decided to get a second opinion, so does my wife. We talked about it, and we called and got a hold of them out in Wilmot, and they said, you need to see Dr. Zent. Dr. Clive Zent, which is a world-renowned CLL specialist, you probably know him. He works in Wilmot. So, I got an appointment with him rather quickly. And that's where all this got started of getting to the real diagnosis. I had to get a bone marrow biopsy, which wasn't done by the previous doctor. Because as I was told later on, CLL, LPL, Waldenstrom's, all these, there's a lot of different blood disorders that are very hard to tell which one it is just with symptoms and blood tests, sometimes. You need the bone marrow biopsy.

Andrew Schorr:
Yeah. Believe me. So, I'm a CLL patient. I know. And I've had very-

Joe Schiro:
Yeah.

Andrew Schorr:
So by looking at the bone marrow, the pathology, they were able to figure it out.

Joe Schiro:
Right.

Andrew Schorr:
Now you developed a friendship with somebody from Niagara Falls, near Buffalo. And that fella said, “Hey, I think you should come over and get yet another opinion.” And this is recent.

Joe Schiro:
Recent, yup.

Andrew Schorr:
You were started on ibrutinib (Imbruvica), which was working well with the doctor at Wilmot. And that was working well, but they said, go the extra mile, see another specialist. Which you did not too long ago. And that led to even yet another medicine, right?

Joe Schiro:
Yes. They recommended the newer, more tolerated, less side effects, zanubrutinib (Brukinsa). They said that they thought that I would have less side effects, because I did get some nasty ones like mouth sores all the time, which was atrocious. I had it really bad, but they said that not only is it less side effects, they thought that I would have better results. Even though I was stable for all those years, since 2015 on the ibrutinib, they thought the zanubrutinib would put me in an even better position, blood test wise and feeling wise in general.

Andrew Schorr:
Right. Let me just explain that to everybody. So ibrutinib is a BTK, or Bruton tyrosine kinase inhibitor. And it's been terrific for people with Waldenstrom and made a big difference for you. Zanubrutinib is a new generation of a BTK inhibitor. And so, there'll be some people where that will be a better drug for them. And that has to be figured out between you and your doctor. In the case of Joe, that's working well. So how are you doing now? How are you feeling?

Joe Schiro:
Well, I'll tell you, I am not having any mouth sores. Those are gone, and I am not getting the really low hemoglobin, the low red blood cell counts in general that I was getting when I was on ibrutinib. Because I had to get a blood transfusion before, because it dropped really low, the hemoglobin, and every time I got up, I would get faint. And all along the time that I was taking the ibrutinib, I would still feel that faint, head rush type feeling when I would get up from a seated or laying position.

Andrew Schorr:
So you're doing better.

Joe Schiro:
I'm doing better, yes. I'm doing better.

Andrew Schorr:
Okay. Now this is a man with six kids and a grandkid. And a wife, Jen, of 26 years. Right?

Joe Schiro:
Yeah.

Andrew Schorr:
So while you are on disability now, you want to live as full a life as you can. So, Joe, let's pull all this together, what we would say to other families affected by Waldenstrom. It's a rare condition. What points do you want to make to people, so they get what's right for them?

What Advice Do You Have for Fellow Waldenstrom Macroglobulinemia Patients?

Joe Schiro:
Well, the most important thing that anybody can do for themselves when they get diagnosed with any cancer is to get a second opinion right away. A second opinion, I can't tell you how invaluable a second opinion is. It literally saved my life. If I didn't decide to go get that second opinion, I would have been, in 2015, I would have been on chemotherapy for cancer I didn't even have. And I'm sure that happens to a lot of people out there. And who knows what would have been the end result from that? Probably not good.

And try your best. I know we talked about this in my Waldenstrom's group, Waldenstrom's macroglobulinemia support group on Facebook. We talk about seeing a specialist. In the Waldenstrom's group, we try to see a Waldenstrom’s specialist, even if we have to go on Zoom with them or travel there. You can get expenses paid for if finances is an issue getting to them, because it is far away from a lot of people. They have a few locations, but these specialists are invaluable as well.

Andrew Schorr:
Right, right. I really agree with you. And just to point out, as you said about the bone marrow biopsy. So, not every hospital, not only not everybody does that, but also that bone marrow sample goes to a pathologist. But if you're at some little hospital, the pathologist may not be experienced in looking for a rare condition like Waldenstrom.

Joe Schiro:
Right. Exactly.

Andrew Schorr:
So it's not just the doctor you see in the exam room, but it's the behind-the-scenes people who help analyze. And getting an accurate diagnosis is so important. It's made a big difference for you, Joe. And I think you, really your sense of getting a second opinion, going to Wilmot, that was a big deal. Good for you. And then following the advice of your friend, where that led you to another great cancer center, Roswell Park in Buffalo, where they had a new option for you that had a medicine, which apparently for you has fewer side effects.

Joe Schiro:
Yes.

Andrew Schorr:
So it's getting the best cancer therapy with the fewest side effects.

Joe Schiro:
Exactly.

Andrew Schorr:
So you can go along with your life. Well, Joe Schiro, I want to thank you. And we all recognize Waldenstrom's is a rare condition. So, you coming together with the folks on Facebook, sharing information, sharing information here. So, what's your outlook for the future, Joe? You're living with this condition, but you got kids, you got one grandkid. I bet you'll end up with others. Do you have an outlook long into the future?

Joe Schiro:
Yeah. I never, never thought of this as like, oh, well, this is going to come to an end in X amount of years. I've never heard that from any of my doctors. My doctors told me that I'll, I could live till just as old as anybody else. We just don't know. I mean, I could still be taking the pills in my seventies. I'm only 47 right now. Or, I mean, I'm sure by then, by the time I'm 70 years old, there'll be 10 times better things out there to take. So, I got a positive outlook on it. I'm not worried.

Andrew Schorr:
Good for you. Well, all the best with your family, with your wife of decades now, grandkids, probably more coming. And Joe, thank you, Joe Schiro, for being with us today from upstate New York. And we're so delighted you're getting excellent care and state-of-the-art medicine is working for you.

Joe Schiro:
Thank you, Andrew. Thank you for having me and letting me tell my story.

Andrew Schorr:
Sure. I'm Andrew Schorr with Joe Schiro. Remember, knowledge and being a proactive patient can be the best medicine of all.

 

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