A Cancer Diagnosis Leads to a Chronic Condition | Hypopara Series: Part 4
In this episode, Kerri Fitzgerald speaks with Michele Rayes about her journey from one life-changing diagnosis to another. After being diagnosed with thyroid cancer in her early 20s, the surgery that helped to address the cancer subsequently resulted in a diagnosis of hypoparathyroidism, a rare, chronic disease for which there is no cure. Michele speaks in-depth about the physical and mental toll that both health conditions had on her. She also discusses the clinical trial she took part in which helped to bring a new treatment option, palopegteriparatide, to hypoparathyroidism patients everywhere.
Watch part 2 of Michele’s story.
Kerri Fitzgerald:
Michele Rayes, welcome to My Hero 360.
Michele Rayes:
Thank you.
Kerri Fitzgerald:
We’re going to talk today about your health journey. You were diagnosed with thyroid cancer at 23 and underwent surgery, which resulted in a subsequent diagnosis of hypoparathyroidism.
First, can you share a bit more about your cancer diagnosis? You were diagnosed at such a young age, which I imagine was scary and difficult to confront.
Michele Rayes:
Of course. Anytime I think you hear the C word, the cancer word, it’s scary. There’s a lot of feelings, a lot of emotions. I think especially for me, A) because I was young, and B) when I was going through my diagnostic journey, I had been sick over a year and kept being dismissed for various reasons. One of the things I distinctly remember them saying when they finally decided they were going to do a scan and an ultrasound was, “Don’t worry. You’re too young to have cancer.” At that time, I took that at face value. Didn’t realize that, now I know with aging, that children get cancer. Nobody’s too young to get cancer. When I first heard the words, I was really upset just because I was like, “They told me I was too young for this, not to expect this, that it was going to be something else.”
That’s kind of how my journey began. Yes, it took time to even get to the point where they would test me and then finally got those words and a lot of emotions that went along with that.
Kerri Fitzgerald:
I can imagine. That’s concerning that you would be told, “Oh, it’s definitely not this,” only to turn out that it is. That’s just not a way you want to have your medical experience happen.
After you had surgery to remove your thyroid and subsequently found out that you now had this lifelong condition as a result of the surgery, called hypoparathyroidism, how did you come to understand that diagnosis? How did you learn about that?
Michele Rayes:
In my many years speaking about my disease state, I will say that I have said often I felt like I was lucky in some ways because I hear so many people, months or years after the surgery, even though it’s a known side effect of this type of surgery, that they didn’t have a firm diagnosis, or they went untreated and ended up with some serious complications. I feel like I was lucky because the day after my surgery, they knew my calcium tanked.
I will say hindsight is I was lucky that I had a name to the diagnosis, but I didn’t have any clue back then what that meant. Nobody explained it to me. I was probably still undertreated. They told me, “You have hypoparathyroidism.” At the time, there was no Google. I didn’t look it up. I went with whatever my doctor said, and he said, “You’re going to take 1 calcium pill a day, and you’re going to lead a perfectly normal life.”
Hindsight now, 30 years later, I know that that’s not true. It’s not 1 pill a day. It’s not a simple life. Even after I figured out more about the disease, once I got more involved in my own healthcare, I realized now there were a lot of things I experienced in that timeframe that I didn’t realize were related to the disease. I kept thinking, God, I have the worst luck. Now, I’ve got this. I’ve got that. Now, I’m tired all the time, or now this. I had no idea that it was because I wasn’t being properly treated for hypopara.
Kerri Fitzgerald:
For people who haven’t, like you, when you’re diagnosed, haven’t heard of the condition, how would you describe it to people?
Michele Rayes:
A lot of times, the things that the patients are feeling is, well, tingling. Kind of feels like when your leg goes to sleep, only it can happen all over your body. A lot of numbness. Muscle cramping. Those are the major everyday type symptoms and a lot of fatigue. Something I didn’t learn until many, many years into my diagnosis, over time I developed severe anxiety. I just thought, great, got another disease. It turns out that PTH controls mood, depression, anxiety, and so the lack of it and the longer you have a lack of it, the worse your anxiety becomes.
Something nobody told me about the disease is, if you’re undertreated, you can end up with things like seizures or a heart attack. The disease can be very serious and very debilitating. It doesn’t have to be, though, if you’re properly treated.
What I want the general public to know is, when you are lacking PTH, it’s not as simple as … People think of it as a calcium disorder, but it’s not. It’s a lack of PTH disorder. People think, well, if you just ate more calcium in your diet, you’d be fixed. No, that’s not how it works because without the PTH, my body can’t absorb the calcium properly. I could take 40, 50, at one point, I was taking 60 pills a day. I could take that many pills, and my body just isn’t absorbing it. It wouldn’t matter how much it was in my diet. It wouldn’t matter what else I did. It’s just not how it works. But every muscle in your body needs calcium to function, including your heart. It’s very important that we feed those organs properly.
Kerri Fitzgerald:
You were diagnosed at a very young age and not at the more typical age, let’s say, that people may be diagnosed with this condition. You’ve lived with it for quite a while. How, over that long-term period, has it impacted you? You talked about the anxiety, fatigue. Just how have you lived with and learned to live with the condition over those years?
Michele Rayes:
I think partially I learned to live with it because I thought, “I don’t have a choice.” I’ve got bills to pay. I’ve got a family to take care of.
Something you’ll see in a lot of my interviews is I often say I had this disease before marriage, before children, and kind of before life. Like you said, I’ve had it a lot longer than most post-surgical patients. Obviously, our genetic patients have it a lot longer. It affected me because it’s not a normal “I’m a mom, and I have little ones” fatigue when I talk fatigue. I could have got up an hour ago, and I’m so tired I can’t move, but it’s also about the muscle disability that it causes. There were times in my life when my 4- and 5-year-old had to help me walk and stand. I’d be at a school assembly, and I couldn’t get myself out of the chair. It’s really sad when you reflect back and go, “My children shouldn’t have had to bear that responsibility.” But they did. They began to recognize my symptoms before I recognized my symptoms. If I was slow to react, they would automatically naturally come over and assist me to stand up.
While it sounds heartwarming, it’s sad that their lives were forever affected. Although, I do want to say, in the case of my oldest daughter, I didn’t realize until she went to college how it affected her. It was heartwarming to read her college entrance essay, and she wrote about how she decided what she wanted to be in life based on what she saw me go through. She wanted to develop a drug that would help people like her mother. That’s how she decided what she wanted to go into.
Kerri Fitzgerald:
That’s really sweet. I imagine it helps your children, perhaps, have more empathy toward other people who are living with health conditions because they saw it firsthand. They saw the effects of it and can understand that it affects the whole family, right?
Michele Rayes:
It does. That’s the thing, it affects the whole family. For a long time, it affected my ability to work. There were points in my life where my husband and I barely with 2 checks made life, but we had to make some tough decisions at times. What’s more important, my health or trying to figure things out or tightening the budget?
Also, everybody has to support. I shared a little bit about my children. My husband had to … There would be times he would have to pick up the slack. He’d work full-time and then have to take care of the kids. While I think in every family it should be a shared responsibility, I feel like he had to pick up more than his fair share sometimes.
Kerri Fitzgerald:
That’s probably something people with a chronic condition can relate to you on is just how it presents itself throughout the course of your life and how you have to make decisions about things unrelated to your health based on your health, right?
Michele Rayes:
Absolutely. I think it’s very important to remember it doesn’t matter whether I have hypopara or lupus or myasthenia gravis. It doesn’t matter what your chronic or rare disease is. There are a lot of things that we, as rare disease patients, share in common. One of them is how it affects the quality of our life, how it affects our families, and how it affects how we are able to be a productive member of society. Sometimes you feel like a burden on society, and that’s another whole issue that we have to deal with as rare disease patients.
Kerri Fitzgerald:
Very complex. A lot of different facets of navigating a health journey.
You mentioned treatment a little bit earlier. How people think you can just eat your way out of it. Eat the right minerals and the calcium. For a long time, the standard of care has been supplementation of vitamins and minerals. Recently, in 2024, the FDA approved a treatment specifically indicated for hypoparathyroidism. It seems pretty difficult to believe that a condition that you’ve had, you’ve lived with, and many other people have, just recently got a treatment approved for it. Can you talk about the treatment itself that was approved, but also your feeling on how did it feel to see this group that you’re in, this community, finally get a specific treatment available?
Michele Rayes:
Standard of care, which was, for those that don’t know, was over-the-counter calcium, over-counter vitamin D, coupled with a prescription vitamin D because there are 2 different types of vitamin D in your body. Like I said, it turned into a lot of pills a day for most of the population. We were told for years that it’s because PTH is a finicky hormone is part of it, so it was hard to develop a drug that was stable.
I think it’s also because, just like other non-hypopara patients in the world, physicians themselves didn’t get a lot of education about parathyroid hormone and how much it’s responsible for in your body, and so they didn’t really believe that we needed to treat more than just the calcium, even though it is more than just a calcium disorder.
When it finally came, I will say I was an early adapter. I actually found out about the clinical trials. When I heard, I was literally on ClinicalTrials.gov every day going, “Did it go live yet? Did it go live yet? Did it go live yet?” The first day it went live, I jumped on and am happy to say that I was able to be on the drug for several years before it came to market in 2024.
By then, I was involved in the HypoPARA Association. To know what it had done for me and how much it had changed my life, that day when it came to market was just so wonderful to know that now so many more people in my community were going to be able to benefit from this medication. I mean, it was just this overwhelming, amazing feeling to know that so many people were going to be able to see the life changes that I had, and the life that I had known for 20 some years was drastically different after it.
Kerri Fitzgerald:
You said you were involved in the clinical trial, which is amazing. It’s so important that people participate in clinical trials because it makes treatments available for different conditions. I want to ask you about that because I think sometimes people can have a fear, a misperception, about clinical trials, that it’s experimental or last-line therapy. What would you want to share or maybe correct about people’s understandings of clinical trials?
Michele Rayes:
I do think a lot of people think that clinical trials are only for cancer patients. I’ve heard that. Or they are a last line of therapy. Last-ditch hope. In some ways, I did feel like I was on my last hope. I was in kidney failure by the time I found this drug. I had so many side effects from the long-term effects of this disease that I kind of felt like that, but I don’t want it to make it seem like I was as bad as I was dying or I’m as bad as a cancer patient. I’m not trying to convey that at all. I do think that there’s this misperception. There is no prescription drug that is available in America that gets there without a clinical trial. We want those clinical trials because it proves safety, it proves efficacy, and we want that. We want them to be safe and effective.
I will say, though, that it is not for everyone. You are setting yourself up to be a scientific experiment. There’s this perception that, “Wait, it’s wonderful, and she got the drug, and she’s amazing.” Because that’s not always going to be the case. Unfortunately, some people have to be on a placebo, which means they’re not really getting the drug. Eventually, they will get the drug. I haven’t heard of one yet that they don’t get the real drug, but maybe there’s one out there. Most trials, there’s a period of time where they have to be on the placebo, and then they’re guaranteed to get the drug. Usually, it’s after 6 months, but that’s a long 6 months where your body’s being played with, and you’re having ups and downs, and you think you have it, and then you think you don’t have it. It’s a mental thing. I think if you’re not in the mental space to be on the placebo, or you’re not in the mental space to have to go for weekly visits or whatever the trial requires, then maybe it’s not right for you.
I will say I jumped in feet first and didn’t even ask how many visits are required and what is this going to take for me to do. I just thought it doesn’t matter at this point. I’m going to do whatever it takes. I would caution people before they go in to make sure you ask all the questions, and be really prepared mentally for it.
Kerri Fitzgerald:
That’s some really good feedback for people to understand about clinical trials. Of course, nothing is without risk. There are some people who may be in a better place in their life or their health journey where they can take on that opportunity. It’s great to hear your first-person, real-world experience with that.
Once the drug became approved and now, you said you were an early adopter, you were on the clinical trial. There are always early adopters, and now it’s been out and available for about a year and a half. How would you say this treatment of palopegteriparatide is influencing the patient community and the field of hypoparathyroidism?
Michele Rayes:
In the beginning, I mean, we have a lot of our more complicated patients jumping on. They’re early adopters. Even now, there’s still people, though, who are like, “Oh, I don’t know.” Some of the reservation is because it is an injectable, and so a lot of people are afraid. They’re like, “I don’t want to give myself a shot every day.” I would say to those people, the shot doesn’t hurt. Most days, I don’t even feel it. It’s risk-benefit. The benefit far outweighs that little, tiny pinch every day. I do understand. I would say, about 6 months in, we noticed a huge change in the conversation around it and the acceptance of it and not just from the patients. I think this is more important than from the patients is that the doctors are starting to change their tone.
We’re not completely there yet. Don’t get me wrong on this. There’s still a lot of work and education to be done, but we are hearing a difference when we set up, we say at physician conferences. Before, we would hear, “Oh, my patients are doing fine,” or “Their numbers are always fine.” Just because your patients’ numbers are fine doesn’t mean they feel fine. Are you really having those honest conversations with them about how it’s affecting their daily life? We’re starting to hear a turnabout, “Wow, I put 1 patient on it, and I didn’t think the rest of my patients needed it, but there’s been such a difference. I think maybe I should try it,” or “Now that I’m hearing all this noise, I’m starting to realize there’s a lot of things that I didn’t think were related,” which patients have been saying for a long time this is related. Doctors are starting to realize PTH is a lot more complex than what they knew.
It’s not only benefiting more patients by having their doctors offer the drug to them. It’s bringing forward more research because now we’re seeing some doctors going, “You know what? Maybe we need to do research about what this disease is actually doing to their bones or to their brain or how it affects anxiety.” While the research isn’t done yet, it’s got started, which is more than we had a year and a half ago.
Kerri Fitzgerald:
That’s an important point. It’s not just about the patients. It is about the doctors because it does take 2 to make a treatment plan happen. As you said, it also raises interest and awareness of future research. I know there are a few different treatments that are in development in different phases of clinical trials.
What is your hope for the future of treatment for yourself and just hypopara patients in general?
Michele Rayes:
I think it’s very important that we don’t hang our hats on the 1 treatment. While it’s great for me, it’s not great for everyone. We’ve already seen there are some patients who don’t do well on it, and that’s for various reasons, whether they have comorbidities, which means other diseases that affect the way they can take this medication, whether they maybe didn’t need as much to begin with, and this sends them now into a hypercalcemic situation, which is no fun either. Maybe they’re allergic to one of the components that the drug is made of, and they had a reaction to it. There always needs to be at least one other choice.
There is still so much we need to learn about our disease and how the PTH plays a part and how the receptors play a part. I think there’s room for other medications that interact with other parts of the body better or differently.
Then exciting that there was work on targeted therapies. We talked a lot about me being post-surgical, and most of our patients are post-surgical, but there are genetic patients, and their body’s handling the disease differently based on whatever genetic mutation they have. Right now, there’s in the works our first targeted therapy for a very specific genetic form. There’s 26 genetic forms of this disease, and one of them has the potential in the very near future to have a therapy just for their specific type, which is super exciting.
Connect with the HypoPARA Association:
https://www.hypopara.org/
https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw
https://www.instagram.com/hypoparaassoc/
https://www.linkedin.com/company/hypoparathyroidism-association/
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