Patient Stories

Kathy Tynan

I was introduced to MDS in 2014 when my mother, who was in her late 70s, was diagnosed after having other health issues. I served as my mother’s caregiver. When she was diagnosed we knew nothing about MDS and had never known anyone who had the disease. My mother’s MDS journey kept us close and I feel blessed to have been able to have been by her side throughout it. Thanks to my mother’s doctors, we were given the information, education, and tools we needed to care for my mother. She had weekly infusions and blood transfusions. By being there for my mother every step of the way, we were able to remain close until her death in December 2017....

Sue Nickerson

I trust my intuition and my village. The words of Jewel’s 2003 hit “Intuition” have stuck with me throughout my MPN and MDS journey, “Follow your heart. Your intuition. It will lead you in the right direction.” I lived mostly symptom-free with a type of MPN called Essential Thrombocythemia JAK2+ for 18 years. When I received an abnormal blood test, I began to worry that my disease had possibly progressed into Leukemia, and possibly AML. I was on Hydroxyurea for 13 years. With the help of my hematologist, I went off this medication for 5 years, but unfortunately blasts (immature blood cells) began to occur. I googled furiously looking for explanations of my first bone marrow biopsy report. Despite my...

Connie e. Connely

“Your doctor thinks you have cancer!” my mother exclaimed. “I have some of the signs of multiple myeloma, so we are ruling out the possibility“, I explained. “The office will call to set up the bone marrow biopsy”. They x-rayed my full body. I can now tell people that I’ve had my head x-rayed! I also had to collect my urine for a full day. Yes, we were able to rule out multiple myeloma. It turns out that I had something else. I had my bone marrow biopsy on May 17, 2017. Waiting for test results is always hard. June 2, 2017, my oncologist pulled up her chair next to my mother and me and said, “I was surprised by...

Fran boyle

My MDS Journey started in 2000, when my family doctor noticed that my Hgb was going down slightly during my yearly physical. After this occurred three years in a row, he referred me to a local hematologist in 2003 who told me he didn’t know what to make of it, so I would return to him yearly until he decided to do a bone marrow biopsy. That was in 2006. I was 56. Results showed that I had RARS. Refractory anemia with ringed sideroblasts. At that time, my Hgb was around 10-11. The hematologist didn’t give me any information, he just told me not to look it up on the internet as I could have this for years without needing...

John Soper

While I’ve been generally healthy for most of my life, I’ve had several instances of elective or emergency hospitalizations. The first of these involved a bleeding ulcer in which my hemoglobin dropped to around 6-7 g/dl. I was treated in a hospital in California, at the very beginning of the AID’s crisis. Although there were no tests for AIDs, I was going into shock and received my first transfusion.

Michele Riley

Simply put, my cancer story is about having faith and trusting your instincts. Of course there are many episodes and a wonderful and important supporting cast and crew. I am the star in this story, but I am also the director. My doctor is the director of photography. He has the “vision” of how to orchestrate my treatment plan. But all decisions are ultimately mine. My best advice to you is: Always be the director in your story. In other words, always have an active roll. My story begins at the end of 2006. I found myself really struggling through the holiday season. I was 38 and finding it really hard to complete holiday tasks, do my usual weekly errands,...

Valerie Fons

God on high, hear my prayer, In my need, you have always been there. He is young, he’s afraid, let him rest, heaven blest. Bring him peace. Bring him joy. He is young. He is only a boy. Let him live. You can take. You can give. Let him be. Bring Him Home, Les Miserables Surrounded by the Atlantic Ocean and the Caribbean Sea is the Island of Hispaniola and the town of Puerto Plata. When my canoeing partner and I landed at this seaport town, we had already traveled nine thousand miles in our solo canoes from the Arctic Ocean enroute to Cape Horn, Chile. I sought the cool peace of sanctuary and walked down a street paved in...

Jill Whitney

My journey with MDS (Myelodysplastic Syndromes) began in December 2007. After playing volleyball with my youngest daughter, I noticed that my forearms were badly bruised. This along with frequent headaches and fatigue prompted me to schedule an appointment for a physical. Little did I know our lives were about to change forever. We were getting ready to depart on a cruise to Cabo San Lucas, Mexico to celebrate my in-laws’ 50th anniversary, but my local hematologist wouldn’t allow me to go until a bone marrow biopsy was done. At first, he suspected a vitamin B-12 deficiency. B-12 injections helped for a short time, but then my counts slowly began to decline, especially my platelets. After six long months and numerous...

Janet Warfield

My journey with MDS began in March of 2014. My husband, Bill and I flew to San Diego and then took a beautiful drive through the San Bernardino mountains to Indian Wells. We had tickets to the Indian Wells professional tennis tournament. I was especially excited because we were going to get to see Rafa Nadal play. We arrived on a Friday night exhausted from a long day of travel. I remember not feeling very well but went to dinner and then bed hoping a good nights sleep was all I needed. Bill was up bright and early the next morning. Although we had tickets to see Rafa play that night, Bill went in search of tickets for the day...

Tom Haygood

I have what?? Myelodysplastic Syndrome?? That’s how my journey began six years ago at age 62. It was the fall of 2013 when the common symptoms of MDS started. Fatigue and joint pain became a common occurrence in my everyday life. After a visit to my family doctor, blood tests were run and the results indicated some abnormalities. I was referred to a local hematologist who ordered additional blood tests along with a bone marrow biopsy and CT scan. With those results in hand, I was diagnosed with MDS. Since I’d never heard of the disease, the MDS Foundation and the Leukemia & Lymphoma Society were excellent resources to learn more about MDS. I also joined an MDS support group...

Ashley Camara

My story begins a few years back…in Mérida, Yucatán, México where my brother and I were born and raised. My brother and I were the type of kids that would rarely get sick.

We were raised to be very independent, responsible, caring, hardworking people that loved spending time with friends and family and we shared a passion for helping others.

Brian Anderson

My story begins in after a routine, annual check-up with my doctor. I was 49 years young. Overall, my exam was uneventful, but a few days after my examination I received a call from the doctor’s office asking me to return for a second blood draw.

I really wasn’t concerned until my doctor said he couldn’t explain why my counts, particularly for my platelets and white blood cells, were so low. The anxiety began to climb when he referred me to a hematologist/oncologist. Healthy people don’t need to go there, do they?

Ron Cook

My battle with MDS began when I was diagnosed in the summer of 2011. In January 2012, I began to receive infusions of Vidaza seven times each month. In August of 2015, I wrote an article about my experience with the disease and its treatment. The article was published by the MDS Foundation in the Fall 2015 issue of The MDS News. This is a brief update on my fight against the disease. My treatments with Vidaza continued until August 2016, when they were no longer effective. I received 414 infusions over the course of those treatments. The treatments had permitted me to continue most of my usual activities. In late 2015, I had cataract surgery on both eyes and,...

Shirley Bulloch

Survivor! Advocate! Fighter! Determined! Researcher! Positive! These words describe me after my 16 year battle to survive MDS. I recorded everything in a journal and called it “Myelodysplasia – My Journey: Letters to a Friend”. If I had started the journal today, it would be entitled, “Myelodysplasia – What a Trip”. I was referred to a hematologist in late May of 2000 to determine the cause of my extreme fatigue and dizziness. I had been treated with B12 injections for years for anemia, but the lab results indicated a problem with my hemoglobin. On June 1, 2000, Dr. Yogesh Gandhi performed a bone marrow biopsy. One week later, he called to inform me that I had myelodysplastic syndromes refractory anemia...

John Kenison

I spent a couple of years watching my blood counts go up and down and my platelet count decreasing. It was June 2017 when I was diagnosed with MDS by Dr. Ali at the James Carey Cancer Center in Hannibal, MO. We made a trip to MD Anderson Medical Center in Houston, TX for a second opinion. They agreed on the diagnosis, and the treatment. My wife and I discussed the options we had, and I decided one good year was better than 2 or maybe 3 years with the treatment. I discussed this with each of my five children and received mixed reactions. I asked them to prepare the grandchildren in their own way, when they thought the timing...