You Have MDS, Now What?

Last updated: October 2022

"I don't understand what is wrong with you," my friend said. Although I didn't particularly appreciate how she worded her statement, I laughed. I understood what she meant. Myelodysplastic syndromes (MDS) were something I hadn't heard of either, so I had to study.

Myelo is a Greek word meaning marrow. Dysplasia means abnormal shape and appearance. MDS (myelodysplastic syndromes) is a group of diseases, not just one. That's why MDS patients can have different symptoms and need other treatments.

Bone marrow is a factory

Remember when you studied biology in high school? You probably learned something about the body's circulatory system. Inside certain bones is a spongy tissue called marrow. This marrow works like a factory to produce your blood cells. Unfortunately, when you have MDS, your factory is not working correctly.

Red cells transport oxygen from the lungs to the tissues. White cells fight infection, attack disease, mediate allergic responses, and heal damage to the body. Platelets work to clot the blood.

When you have MDS, your cells don't develop into healthy cells. The cells may not be of standard shape or size (dysplastic). Instead, they may be immature (not fully grown) and stay inside the marrow instead of going out in the blood. These immature cells are called blasts. In my case, I am low on red cells (anemia) and white cells (neutropenia). When one is low on platelets, it is called thrombocytopenia.

Treatment Options

Watchful waiting or watch and wait was my plan four years after my diagnosis in 2017. Oncologists often recommend watchful waiting when MDS is considered low risk. I had complete blood counts (CBC) every three months, followed by a visit to my oncologist. At first, I was anxious about waiting. Why couldn't I start chemo so I could get well? But then, my sweet cousin offered to give me bone marrow. Couldn't I have a transplant?

I contacted the MDS Foundation, and they immediately mailed me an information packet. After reading their material, I thought watchful waiting was a good idea.

I now take injections to increase my hemoglobin. I often tire after these injections, but I have more energy overall. Later, I might need some transfusions or chemotherapy.

Another treatment, Revlimid is often used to treat MDS and some other cancers. I understand it is costly, even with insurance. However, there are grants available. Let's all pray that more options will be available in the future.

What could go wrong?

A bone marrow transplant is the only cure for MDS. I used to think I wanted a transplant, but I don't believe I am a candidate as I learned more. For example, Graft-Versus-Host Disease (GVHD) is a common complication of the transplant. GVHD happens when the donor's immune cells, now in the patient, begin to see the patient's body as foreign and mount an immune response. In other words, my cousin's cells and mine might not get along.

In 2012, Good Morning America co-anchor, Robin Roberts, had a successful transplant after her MDS diagnosis. Her older sister, Sally-Ann, was her donor. Robin wrote about it in her book; Everybody's Got Something.

Don't trust Dr. Google!

Most people, after their diagnosis, want to know their life expectancy. Spoiler alert! Those predictions are sometimes wrong. Don't trust Dr. Google; don't do the doom scroll on your phone. A lady posted on an MDS Facebook page that she had assumed she wouldn't live much longer, so this lady donated all of her summer shoes, thinking she wouldn't be on the planet for spring. (This sounds like something I would do, but I swear it wasn't me!) Guess who needed to go shopping for new shoes? I hope she got some cute ones!

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