My doctor explained to me I was in what is called “partial remission.” I am well aware that this is temporary, but as I wrote in another article – so is life! While there is no cure for my disease, I choose to appreciate each and every day that I feel good.
PUBLISHED June 29, 2019
Jane has earned three advanced degrees and had several fulfilling careers as a librarian, rehabilitation counselor and college teacher. Presently she does freelance writing. Her articles include the subjects of hearing loss and deafness, service dogs and struggling with cancer. She has been a cancer survivor since 2010.
She has myelodysplastic syndrome, which is rare, and would love to communicate with others who have MDS.
My doctor explained to me I was in what is called “partial remission.” What does this mean? Web MD explains this means “The cancer is still there, but your tumor has gotten smaller – or in cancers like leukemia, you have less cancer throughout your body.” Complete remission means all your cancer cells are gone and there is no evidence of disease (abbreviated NED). However, doctors are cautious about using the term “cured” with any type of cancer before five years has passed, because it can come back.She has myelodysplastic syndrome, which is rare, and would love to communicate with others who have MDS.
With a blood cancer like mine, myelodysplastic syndrome (MDS), there is no cure and I will never be NED. All my bone marrow biopsies show abnormal cells no matter what. The number of cells on the deletion 5q has gradually increased over the past nine years from 30% to 60% to 90-100%. This means there is a tiny little wrong hook on each red blood cell. But the oncologists have told me not to worry unless the blast cells increase and start to go into leukemia, which it did once. I was put on a powerful Vidaza (azacitidine) shots for two years, which kept the blast cells down and the MDS from worsening into a full-blown leukemia. I know I was one of the lucky ones.
I had no idea how important blood work is until I was diagnosed with cancer. Now I have learned that MDS causes the red blood cells not to carry blood correctly to the body. Results can be inability to walk long distances or climb steps, extreme fatigue and shortness of breath along with other bothersome symptoms. Thankfully the two chemotherapies I was on, Revlimid (lenalidomide) and Vidaza, kept me going! But I never truly felt that I was in remission because of the terrible side effects we all know too well.
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