The Roller Coaster of MDS


MDS is a rare form of cancer with its own unique characteristics. Here is one patients perspective on the experience of having MDS.

“You have myelodysplastic syndrome,” the oncologist told me soberly. “The average lifespan for your type of MDS is 104 months.”

I couldn’t pronounce this rare disease, much less spell it! I stammered back that we had caught it early, so what did this mean? She explained this type of cancer didn’t have stages.

It took me a while to recover from the numbness and shock. The only symptom I had entering the doctor’s office was anemia, with no bleeding, no lump and no warning, other than being tired.

I began to research this strange-sounding diagnosis. Some articles I perused called it cancer, other a mutation of the cells. Further research revealed the average length of time to live ranged from a couple of months to nine years, depending on which type of MDS one had. I can’t describe how confused and discombobulated I felt.

After more reading, I realized I was lucky because I had the type of MDS that usually allowed me to live the longest amount of time. I also found out that doctors didn’t originally call this a cancer, but later they reclassified it because the process started with a single cell mutation like every other kind of cancer.

Eventually, I gave up reading about it and decided to face the challenge of living with it.

This is a lonely cancer to endure. There are several support groups for breast cancer and other types, but the numbers of patients are so small for MDS that support groups are difficult to form. The hospital doesn’t have navigators for this type of cancer. There was no one available to ask what patients went through until I found the great magazine, CURE.

I was originally very naïve. I was placed on an oral pill called Revlimid once a day. Since many people have drastic surgery, radiation and IV chemo, I figured this would be a cakewalk.

I was so wrong. Immediately, the fatigue hit me to the point where I was forced to give up one of my part-time jobs. The diarrhea was raging and unpredictable, until my oncologist gave me medicine to help. Worst of all, the chemo caused more deafness. I went from being hard of hearing to profoundly deaf. Revlimid is a derivative of a thalidomide drug, which has the side effect of hearing loss. My oncologist, audiologist and I didn’t know this.

I did join a nutrition class for people with cancer and met other people at the cancer center where I received treatments. I soon discovered another unique aspect of MDS. Other patients had certain deadlines such as weeks or months of chemo, and counted these off until they were finished. I had no celebratory bells to ring. I would be on chemo forever, until it no longer worked. Then my ultimate choices would be a bone marrow transplant, which is risky at my age, or clinical trials. Honestly, my stomach did a little plunge every time someone asked me when I will be done with chemo and I said never.

Revlimid usually only works for two years, but it worked so well for me that I was on it for six years. After it stopped working I was prescribed Vidaza. This treatment involved 10 shots in the stomach and arms for five days each month. I was forced to stop working even part time because of the fatigue. The side effects were predictably worse. I got angry burning welts where the shots are administered, and went home to put ice on for relief. The pain lasts for several days after the treatments.

I have done this for two years. Every time I get angry, I remind myself that I am alive because of the Vidaza.

The only way to know if the cancer is worse or better, is through a bone marrow biopsy. I have had too many to count. I undergo anesthesia, which makes the procedure bearable. However, I am always nervous to receive the results. Sometimes I get good news and other times bad news. I used to love roller coaster rides as a kid. This feels like being on a roller coaster all the time, and I do not like this ride at all!

Cancer is a lonely disease for every one of us. The doctors can never predict exact side effects, because each patient reacts differently. Every cancer patient has his or her own journey. MDS is even lonelier and I have come to accept this.

One tremendous hobby I have not yet had to give up is travel. My oncologist is fantastic about timing the treatments so I am able to take some cruises. She will decrease the amounts of the chemo so I am not too fatigued to enjoy myself. Cruises are especially nice vacations because I can stay on the ship and sleep if I have to.

I am very fortunate. I have a fantastic oncologist and cancer staff who take great care of me. I have caring and loving family and friends who listen and support me. They are there in good times and bad ones. I cherish them more than ever and have learned to be thankful for the gift of every single day.

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