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What Happens When a Cancer Researcher Gets Diagnosed With MCL?

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Published on February 26, 2020

Key Takeaways

  • When it comes to your health and treatment options, be your own best advocate—ask questions and get a second opinion.
  • If you have been diagnosed with MCL, find the right doctor for you—one who specializes in the disease and values your thoughts and feelings.  
  • A cancer diagnosis may shift your perspective. You may find that you no longer “sweat the small stuff.”

“My first sign that something was wrong was a routine check-up with my endocrinologist who noticed that my white blood count was a little high,” says Stephanie Reffey, PhD, as she shares the story of her mantle cell lymphoma (MCL) diagnosis with Patient Power’s Suzanne Mooney. In this video, Stephanie explains the importance of finding the right doctor and getting a second opinion.

She also shares why she chose to participate in a clinical trial at The University of Texas MD Anderson Cancer Center and how fighting for her life changed her perspective, personally and professionally. Watch now to learn more about her experience as a patient. 

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Transcript | What Happens When a Cancer Researcher Gets Diagnosed With MCL?

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.

Suzanne Mooney:    

Hello, and welcome. I’m Suzanne Mooney from Patient Power, and today I’m speaking with Stephanie Reffey about her journey with mantle cell lymphoma. Stephanie, thank you so much for joining me today.

Stephanie Reffey:     

Thank you for having me. 

Suzanne Mooney:    

I would love to start at the beginning. You’re going along, living your life, probably worrying about those things all of us worry about on a daily basis. Then what was the first sign that something was wrong, and how did that lead to a mantle cell diagnosis?

Stephanie Reffey:     

Sure. So, I think my case might be a little unusual, because I didn’t really have any symptoms. My first sign that something was wrong was a routine checkup with my endocrinologist who noticed that my white blood count was a little high. And it was a little high, so he thought maybe I just had a cold or some sort of mild infection and had me come back a couple weeks later to get it checked again. And instead of having it resolved; it was up a little higher still. 

So, this was late 2015. He referred me to a specialist who then did another blood test in December of 2015, and it was higher still. So, then in February of 2016, he ran a number of tests including he did some genomic sequencing and did a bone marrow biopsy and a PET scan, and I was eventually diagnosed with mantle cell lymphoma. It was early and slow-growing at that stage, so they recommended that I watch and wait for a while, but that was my initial diagnosis.

Suzanne Mooney:        

And had you ever heard of mantle cell lymphoma before?

Stephanie Reffey:        

I hadn’t actually, which is kind of interesting. I work in the cancer space, not in blood cancer but I’ve done cancer research for a number of years, and I had never specifically heard of mantle cell lymphoma. So, I did what everybody does. I immediately went to the Internet even though they tell you not to. And I started learning as much as I could. Fortunately, I found some reliable sources, but there’s some questionable information out there too.

Suzanne Mooney:        

Yeah, there definitely is, and I understand. It can be difficult to not go down that path of diagnosing yourself on the Internet and looking at all the research that’s out there and the articles. So, you received this diagnosis, and then what was your next step? How did you decide where to get treated, how to get treated? Where did you go from there?

Stephanie Reffey:        

Sure. So, I mentioned that my endocrinologist had referred me to a specialist. He was actually a local oncologist here in Dallas that specializes in CML, chronic myelogenous leukemia. They initially thought that might be what I had. He had never seen a case of mantle cell lymphoma and wasn’t overly excited when I asked him that question. But he did know blood cancer. He was a specialist in CML, and he did get the diagnosis, but I sort of leveraged some of my connections in the cancer community and got a referral to MD Anderson where there was a mantle cell lymphoma specialist for a second opinion. 

Because I feel like second opinions are really critical when it’s an unusual form of cancer like this is—probably in any case, but especially in this case. So, I went to MD Anderson not long after that initial diagnosis, met with an oncologist there who specializes in B-cell lymphomas and mantle cell lymphoma specifically. They confirmed what was diagnosed here locally and also recommended watching and waiting, so I felt really confident about that at that time. 

But I also decided at that point that at whatever point things progressed; I would definitely go back to MD Anderson for care.

Suzanne Mooney:        

And when did that happen? When did you end up at MD Anderson? 

Stephanie Reffey:        

So, my diagnosis was in early 2016. I was on watch and wait until the end of 2017 so not quite two full years. In October of 2017, my local oncologist recommended that I get another scan, because my white blood count had increased consistently and was now quite high. And the scan showed a few—my spleen was a little enlarged and he thought he saw a couple of lymph nodes. So, I decided it was time to go back to MD Anderson and see what they had to say. He was recommending we could probably wait a little bit longer.

When I went back to MD Anderson, they did a bone marrow biopsy and a scan and recommended that I start treatment right away. And they said I was eligible to join a clinical trial, so that’s what I did. 

Suzanne Mooney:        

And was that a difficult decision to join the clinical trial or being in the cancer space as a professional was that an easy decision for you to say, “Yes, I’m on board. Let’s do this.”? 

Stephanie Reffey:        

Well, I asked a lot of questions. In fact, I asked so many questions that my oncologist said, “What do you do?” And so I reminded him what I did, and then he literally took me into his office and pulled up the data and started walking me through what he was seeing so far on the clinical trial. I don’t recommend that, but that’s what happened for me. But I also feel like this was sort of the culmination of all my experience. 

I have done cancer research for a number of years. I understand the value of clinical trials, so I was very excited and optimistic at the opportunity to join one. I just wanted to make sure this was the right one and that I was making a wise decision. So, I don’t regret that decision at all. I think it was definitely the right decision for me, and I’ve talked to a number of other patients since then. And not all have opted to join the trial, but many feel more confident joining the trial after talking to somebody who’s been through it and who understands some of the importance of research. 

Suzanne Mooney:        

And how long did the clinical trial last? Was it a couple of weeks? Was it several months? 

Stephanie Reffey:        

Well, technically I’m still on it because the follow-up phase goes for five years after you complete treatment, but the treatment part itself was 11 months. So, I started in January. I was on the experimental part of the trial. I was on two oral biologic drugs for it turned out to be six months. I reached a complete response in that amount of time, and then I followed that up with four months of chemotherapy, so it was 11 months all in all.

Suzanne Mooney:        

And what is life like for you now? Are you still on treatment at all? Are you on watch and wait? What do things look like these days?

Stephanie Reffey:        

Yeah. So, I’ve had no evidence of disease, so I’m in complete remission since November of 2017. Yay! And I’ve been going back every four months for scans just to make sure I’m still in remission and nothing is recurring. I don’t take any maintenance. I’m not on any treatment. I’m hesitant to say I’m back to normal, because I’m not sure what normal is, but I’m back to normal really other than having to go for follow-up visits every once in a while. 

Suzanne Mooney:        

And how has this experience changed you?

Stephanie Reffey:        

So, first of all, I will say I noted a couple of times I work in this space, and I’m a cancer researcher by training. I’ve always been pretty open and protective of the patient voice in research and how important that is. I always felt like I was pretty friendly to the patient community, but now that I have been and am a patient advocate; you really don’t know until you go through it.

I feel like I have a much different understanding, and I feel like it’s made me a lot better at what I do. But on the other hand, it really sort of set my priorities right. I really don’t sweat the small stuff anymore. I think once you quite literally are fighting for your life, you learn what’s important and what’s not.

Suzanne Mooney:        

Is there anything that I haven’t asked you that you think people should know or that you want to share about your experience?

Stephanie Reffey:        

I might repeat myself a little bit, but I will just reiterate how important it is if you’re going through a diagnosis or even if you think you might be going through a diagnosis to make sure you find someone that you are comfortable with, but also somebody that knows the disease. That second opinion can be so important, and you need to find the right treatment, and you need to find somebody who will work with you to understand what’s important to you and your desires and how you want to live your life.

For me, it wasn’t a hardship to travel four hours for treatment, but that isn’t true for everybody just as one example. And if your doctor doesn’t understand that and isn’t willing to work with you around that, I wouldn’t recommend that relationship. And the other thing is, just really rely on your family. People show up in ways you just don’t expect when you’re going through cancer and be open to that. Let them help. You need support, and they want to help you so let them.

Suzanne Mooney:        

Stephanie, thank you so much for sharing your story with us and sharing your advice. I know that you’re going to help and inspire others who are on a similar path, especially those who have just been recently diagnosed. So, thank you so much for your time. We really appreciate it.

Stephanie Reffey:        

I’m happy to have done it. Thank you so much for having me. 

Suzanne Mooney:        

Thank you for watching. I am Suzanne Mooney from Patient Power. Remember, knowledge can be the best medicine of 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.

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