Jane’s Journey With Myelodysplastic Syndrome

I have myelodysplastic syndrome, a very rare cancer where the red blood cells fail to develop in the bone marrow. For a long time, doctors didn’t call this syndrome “cancer.” With more research, they were able to classify it as a type of cancer, but it’s more easily described as a bone marrow failure.

There are five main kinds of myelodysplastic syndrome. My type is one where patients generally live the longest after diagnosis due to the effects being less severe. My myelodysplastic syndrome didn’t turn into leukemia, something that happens to around 30% of myelodysplastic syndrome patients. 

When I was first diagnosed, I had a fantastic oncologist. She had the nerve to move to Florida! (Haha). She put me on Vidaza shots for two years, which kept my syndrome from developing into leukemia.

In 2010, I received my diagnosis of myelodysplastic syndrome. The only symptom I had before diagnosis was anemia, and I didn’t take that seriously. I have an immune disorder (IGA Deficiency), which causes chronic fatigue. Then, the fatigue expanded to consistent infections. My mother had just died, and I was taking care of her estate, so I assumed it was from that. 

My family doctor ran an anemia test and said, “You’re going in the wrong direction; I’m referring you to a hematologist.” The hematologist took eight vials of blood and then asked to do a bone marrow test. I should’ve guessed something was really wrong, but I didn’t. The immune disorder made me so sick that I shrugged it off. 

The hematologist got the results back. “You have myelodysplastic syndrome.” As I tried to process those words, she continued “The average lifespan is 104 months, just take this medication.” Then she walked out. I was so upset. I’m a PhD counselor, and this was a reprehensible way to treat anyone who was being told bad news. Immediately, I switched to another oncologist who was excellent and would sit down to answer all my questions.

I was initially prescribed an oral medication, Revlimid, for five years. Every single day I was on that medication, I had diarrhea. Every. Single. Day. I was alive but struggling so much. I also have had severe hearing loss since birth, possibly caused by my mother having a really bad case of the flu when she was pregnant with me. While I was on this medication, my remaining hearing worsened. I visited my audiologist, and I lost 30 more decibels of sound. I had gone from severely deaf to profoundly deaf. 

At that time, I taught Deaf Culture at a local college. One section of the course discussed ototoxic medications (medications that cause hearing loss). Revlimid wasn’t listed as an ototoxic medication at the time, but I found out that the medication was a derivative of Thalidomide through my own research. My doctor couldn’t prove that Revlimid caused my hearing loss, but that didn’t change the fact that it was gone.

As my myelodysplastic syndrome slowly slid into leukemia, I started taking Vidaza shots. These shots caused my stomach to swell up red and sore. So, the doctors switched me back to Revlimid for two years. It was keeping me alive.

My doctor referred me to the Cleveland Clinic for a new trial. The oncologist told me that there was a new medication called Luspatercept for myelodysplastic syndrome, and it hadn’t been approved yet. He thought it might be ideal for me. In the meantime, my oncologist also had me go in weekly to the Cancer Center for shots to raise my red and white blood cell count.

When I returned to the Cleveland Clinic to get the Luspatercept, the oncologist told me that the only cure for my cancer would be to have a bone marrow transplant. By this point, I’m 72. I didn’t want to lose a whole year of my life preparing for the transplant, having the transplant, and then recovering from that. I didn’t want to go through that at 72. They kept sending me brochures and trying to match me with donors. 

Luckily, I went to a different University hospital for a second opinion. The oncologist there told me about another option. She told me that I might only have a 35% chance of surviving a transplant with the state of my health and my immune disorder. The oncologist also told me that my previous doctor was brilliant in giving me the shots to boost my red and white counts, keeping me more stable. I returned to the Cleveland Clinic. I always had the right to make my own choices, and they affirmed that.

I started taking Luspatercept, and it’s been miraculous for me. Frequently, with myelodysplastic syndrome, the red blood cells have trouble getting through the blood vessels. People usually die of other diseases because of this symptom of myelodysplastic syndrome. This new medication helps open up the vessels, easing this symptom. For once, I didn’t have any negative side effects. I didn’t have constant fatigue, diarrhea, or anything. Cleveland Clinic eventually said to me that I made the right decision. A combination of making my own choices and excellent medical care led to my successful result.

Why did you start sharing your journey through writing? 

I’m single and live by myself. I have lots of friends and a supportive church group, but it’s not the same. 

The very first article I wrote was that it was okay to be vulnerable. I had never felt more vulnerable in my life than during cancer. People responded to my article saying, “Thank you for your honesty and for sharing.” I realized that this was what I was meant to do. With COVID, it was also too dangerous for an immunocompromised person to be outside. One thing I could do was write. The articles just kept coming and coming. Writing is really my therapy.

In my writing, I talk about the good times. I talk about the bad times. But the connections I make are always surprising. A doctor from the Middle East who didn’t specify which country contacted me through my website. He said that his father had myelodysplastic syndrome and was searching for advice. He planned to bring his father to the United States but wasn’t sure where. I told him that I was at the Cleveland Clinic and gave him the contact information for the Myelodysplastic Syndrome Foundation so he could get connected with the clinical trial. He got back to me saying that he was able to get his father into the Cleveland Clinic. I never heard from him again. Every time I get tired of writing, I remember the people I’ve been able to help so far. I have the opportunity to connect and share advice with people all over the world.

What message do you have for others who are diagnosed with a rare form of cancer? 

Find out as much information as you can. Try to connect with a specialist for your specific type of cancer. Some people in rural areas are five or six hours from the local hospital, but It’s still important for them to get the most up-to-date information about their cancer. I’m very lucky because although I lost the great doctor to Florida, I found a new one. I asked him if he was okay with my Cleveland Clinic doctor signing a protocol for him to carry out. I was particularly interested in doing this because I’d spent about six years on the Patient Advisory Council to build a new Cancer Center, and loved the nurses and people I’d connected with at that hospital. If you want, you can connect with larger university hospitals and still get treatments locally. Don’t let that stop you. 

Find a support group, whether it’s online or in person. We all had different types of cancer, but the Patient Advisory Council was a large support group for me. I still hear from a few people there.

Don’t give up on Cancer Research. In 2010, they didn’t even have the type of treatment that I’m currently taking. Today, they’re working on even better treatments than the one I’m on. I have friends who took the earlier harsh medications, I can’t even imagine what they went through. Don’t give up hope. As long as cancer continues to be funded locally and nationally, change can always be made. Many of us will have the ability to live for a lot longer and live with less of a financial burden.

I urge anyone to get second opinions if they aren’t feeling comfortable with the treatment plan the doctors are recommending. There are so many clinics actively working on cancer research. Find out if they have anything that might work for you. Now, there’s even another medication being tested for patients that didn’t see any benefits using the one I take. Now, people with myelodysplastic syndrome have two great options available to them. There are so many new things coming out every year; hang on to hope.

Photo courtesy of author.