Stacy shares the subtle symptoms she experienced that eventually led to her diagnosis of myelofibrosis, a rare type of bone marrow cancer.

In 1999, Stacy was initially diagnosed with essential thrombocythemia (ET), a disorder that causes the overproduction of platelets. She initially went in to see her doctor because of what she thought were thyroid issues until her blood work showed a platelet count that was off the charts.

After being referred to an oncologist and getting a bone marrow biopsy, she was told she had a bone marrow disorder. Despite not having any symptoms, she was put on medication and continued seeing an oncologist for the next two decades.

During one of her annual checks, her new oncologist found blasts in her blood. The biopsy results subsequently showed myelofibrosis with a non-aggressive mutation.

Shortly after, she consulted with renowned MPN specialist Dr. Serge Verstovsek and found out that she had another mutation. This one was more aggressive so she was put on the stem cell transplant list immediately.

She talks about going through the uncertainty of initial diagnoses when it comes to myeloproliferative neoplasms, going through stem cell transplant, managing an enlarged spleen, and the questions she faced with treatment decision-making.

In addition to Stacy’s narrative, The Patient Story offers a diverse collection of myeloproliferative neoplasm (MPN) stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.

Pre-diagnosis

Initial symptoms

In September 1999, I thought there was something wrong with my thyroid because I had some fatigue. I was tired. My hands and feet were cold, but I don’t know what caused that.

They did a blood test. My platelets were through the roof that they couldn’t even read and had to send out. It was 1,400,000.

When they did a bone marrow biopsy, that’s when they found that I had thrombocythemia. They gave me medication. It was great for 17 years. Then they noticed some immature cells and my platelets dropping. That’s when they found the myelofibrosis.

At work, my lunch hour was always my time to work out. I would do the elliptical and strength and/or core. I would start out on the elliptical and instead of being able to add more resistance or go faster, I get out of breath faster and can’t do more. I’ve got to do less or take away resistance. All I could think of was, Is it because I’m getting older? That was my excuse for it.

That happened in April 2016.

Testing

I had a biopsy. The first one was great. I had twilight in 1999 so I felt nothing.

The second one was a nightmare. Since myelofibrosis is scarring of your marrow, it’s harder to get that sample. I was at the table for about 40 minutes. They kept on trying and couldn’t get a sample so I sat there for another 30 minutes. They brought a second team and they kept on trying until they got a semi-sample.

I found out that morphine doesn’t work on me. The painkiller they gave me wasn’t working so it was hellacious.

Treatment

Medications

I took Jakafi for about six months, but my platelets were crashing and my spleen was still getting bigger so I got off it.

Then I did thalidomide and that was tremendous. It was great. That helped me a lot. It pushed my numbers up.

But in April 2017, I said, “I’ve got a little numbness in my right foot. Is that neuropathy?” My oncologist said, “No, no, no. If you don’t have it in your left foot and just your right, then it’s fine. It would be in both feet.”

August came around and I said, “I’ve got numbness in both feet now.” I had already stopped taking it. I really wish I stopped taking it in April because whenever I got chemo, that’s when it worked its way all the way up to my knees.

Stem Cell Transplant

The stem cell transplant was in March 2019.

Before the stem cell transplant, you go through a boatload of tests, like a bone marrow biopsy. Your family goes through training on what to expect. For the first 100 days, you have to be prepared to be within an hour of the hospital and then expect to say about a month in the hospital.

You check in and they put in a port for them to give you medicine, do blood draws every day, and also give you your chemo.

Side Effects

The other thing worse than the chemo was the immunosuppressive treatment. That’s the worst thing I’ve ever been through in my life. It was basically to crash your immune system.

I’ve never had the flu, but I’m guessing this was like getting the flu times three. You get a fever. I’ve only had probably five fevers in my life. My fever spiked to about 102°F or 103°F. I remember seeing my hands shaking. My body was shaking.

Recovering from Stem Cell Transplant

I stayed at my mom’s for the first week and then I moved to stay with my brother and sister-in-law.

When the stem cells didn’t graft, they kept on saying, “We’ll keep on checking your blood counts.” My blood counts kept on looking really good for a year or two, except my white blood count because they’ve always been pretty high. They said, “Okay, keep on doing what you’re doing.”

It wasn’t until 2023 that my LDH went through the roof, which is what shows how much scarring is in your bone marrow. You’re supposed to be around 150 and mine’s about over 2,000.

I’m on medication because I have neuropathy up to my knees. I got Addison’s disease so I’m on steroids. I also get migraines so I’m on medication for that.

I’m still on several medications from the stem cell transplant. I take medication right when I wake up, when I go to bed, and twice during the day. I also take supplements.

Fatigue

I would like to take a nap every single day. There are so many stages of fatigue. Fatigue stage 1 would be when your hemoglobin is at 10 and when it hits 9, you’re dragging, but you can still do stuff.

Then when it hits 7 or 8, which is where I am now, getting out of the chair and going to cook something requires focus. When I drag my sprinkler out, I’m so worn out and breathing heavily that I slump in a chair and think, I have to go to the bathroom. Okay, I’ll do that in about 15 or 20 minutes when I can do that.

I’m not married. I don’t have kids so I’m taking care of myself. It would be really difficult for me to take care of myself if even more of my body is affected by the chemo. Even though the cancer is gone, there would be other things going on. Right now, I can at least get around and take care of myself.

I asked my oncologist about that a year ago. I mentioned it to him because I got it from the MPN newsletter that I get. I said, “Did you hear about this?” They were talking about a March release from the FDA, then it was pushed to June, and then it was pushed to the fall.

He said, “I’m going to get you on it the second that it gets released,” so we’re definitely on the same page there.

It seems like there’s more awareness of it because there’s people talking about it now. People are getting more into research.

Words of Advice

I could not have gotten through it without my family, my friends, and my church community. There’s no way. When I thought about the transplant, I didn’t worry about the chemo, losing my hair, or being in the hospital.

I dreaded going to the hospital 2 to 3 times a week and having to depend on somebody else to drive me. I lost sleep over that because I did not want to have to put people out like that. It bothered me so much thinking about it.