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Steve Lovell: Myelodysplastic Syndrome Patient

  • Diagnosed in 2010 with MDS after experiencing symptoms the year before
  • Referred to Seattle Cancer Care Alliance and received a bone marrow transplant
  • Currently a patient in the SCCA Long-Term Follow-Up Program and also volunteers at SCCA as a patient advisor

I was diagnosed in 2010 with a myelodysplastic syndrome, also called MDS, which includes a number of diseases associated with the bone marrow.  It quickly became evident that a bone marrow transplant would be my best option for survival.

In my case, there was an abnormality of chromosome 7 in my stem cells, called monosomy 7. Since the stem cells were responsible for making red blood cells, white blood cells, and platelets, this abnormality was resulted in my having a low blood cell count.

Bone marrow The soft, spongy material in the center of your bones that produces all your blood cells, such as white blood cells, red blood cells and platelets. Bone marrow transplant The process of treating disease with high doses of chemotherapy, radiation therapy or both. Bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells. The process of treating disease with high doses of chemotherapy, radiation therapy or both. Because this treatment destroys the bone marrow’s ability to produce blood cells, bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells. Chromosome Part of a cell that contains genetic information. Except for sperm and eggs, all human cells contain 46 chromosomes. Platelet A tiny, disc-shaped piece of a cell that is found in the blood and spleen. Platelets help form blood clots to slow or stop bleeding and to help wounds heal. A tiny, disc-shaped piece of a cell that is found in the blood and spleen. Platelets are pieces of very large cells in the bone marrow called megakaryocytes. They help form blood clots to slow or stop bleeding and to help wounds heal. Having too many or too few platelets, or having platelets that do not work as they should, can cause problems. Checking the number of platelets in the blood may help diagnose certain diseases or conditions. Red blood cell A type of blood cell that carries oxygen in the body. Stem cell A cell from which other types of cells develop. For example, blood cells develop from blood-forming stem cells. Symptom A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. Some examples of symptoms are headache, fatigue, nausea and pain.

Noticing signs and symptoms

I became aware something was wrong in November 2009.  Two situations caused me to visit the doctor and started a chain of events to determine what was happening.

Situation 1: I like to run and for a decade or so, it has been my preferred exercise. In February 2009, I was training for a half marathon and injured my knee. In October 2009, my knee was feeling better and I decided to start running again. However, I found that became tired after running only a few blocks.

Situation 2: I have been a blood donor since I was in college. However, due to having visited China in 2008, my first opportunity to donate in 2009 was in November. Since the technician noted a very low hematocrit (first time that had ever happened to me), I was not able to donate.

Based on these situations, I visited my primary care physician and when she noticed the low blood cell levels, she referred me to a hematology oncologist.

Below are three conditions that can lead to low blood counts and the tests I received to identify the situation:

  • Bone marrow not producing enough or healthy cells: a bone marrow aspirate did not show any problems (however, more on this below).

  • Blood cells being sequestered somewhere: I had a chest X-ray, ultrasound of my abdomen, two CT scans, and a PSA test; however, nothing showed the blood cells were being sequestered.

  • Blood cells being destroyed due to an autoimmune disease: I took a steroid (prednisone) for about four weeks to suppress my immune system. Since levels did not increase, my problem was not associated with an autoimmune disease.

I went into “wait-and-see” mode for February and March 2010. When I started feeling worse in April, my hematologist performed another bone marrow biopsy and aspirate and identified the chromosome abnormality and diagnosis of MDS.

There are three drugs approved to treat MDS; however, one of them does not apply to my particular type of MDS. The drugs are not a cure and only treat the symptoms. A stem cell transplant can cure the disease but does have a degree of risk and a chance of long-term side effects.

I was referred to Seattle Cancer Care Alliance to begin a search for a donor. Multiple 10 out of 10 matches were identified and I decided to schedule the transplant for Fall 2010.

When I was being treated at SCCA, I felt a strong and sincere sense of caring. Everyone is working as a team, dedicated to my well-being.

I did not know how to ask for help

The medical staff at SCCA told me that I would need to have round-the-clock care for three months. Being single at the time, living alone, and with immediate family thousands of miles away, I wondered how I could find 24-hour care for that long period of time. In fact, I was more worried about having caregiver support than the actual procedure. I even thought that I might not be able to undergo the transplant for lack of someone to help me through it. On top of all that, I did not know how to ask for help.

As it turned out, my family, friends, and co-workers responded beyond my highest expectations. One of my friends made a list of caregivers, created a calendar and coordinated my 24-hour care, and devised a checklist to ensure I did not miss any critical medications. My caregivers documented everything, resulting in a huge binder. My sister and cousin flew from their homes in Texas and Kentucky to Seattle for weeks at a time to stay with me. My daily caregivers numbered 10 friends and they took turns taking care of me. They sat with me though rounds of chemotherapy, nursed me when I was sick, made sure I took my medicine, cooked my meals, cleaned my home, took me to daily doctor appointments, walked with me, and kept me sane through the toughest period I have ever experienced.

From “Flat Steve” to recovery

My co-workers at Alaska Airlines also made significant contributions. They provided rides for family that came to town, cooked special meals for me, and even donated their vacation time so that I did not miss my salary. They sent videos and pictures for support and even created “Flat Steve”, a cutout photo of me that attended work meetings and events. This was their way to let me know that I was in their thoughts for the 11 months I was away from work.

My caregivers were diligent and did such a good job that I did not come down with any infections and did not have to go to the hospital, something unheard of with bone marrow transplants. I owe not only my life but also my steady recovery to the wonderful and supportive care of the family, friends, and co-workers. I can never repay my caregivers for all they did for me. I can only hope that I will get the opportunity to help someone else in the future.

Steve Lovell is a patient in the SCCA Long Term Follow Up Program. He was diagnosed with MDS and underwent a stem cell transplant in 2010. Steve recently retired and currently volunteers as a patient advisor at SCCA and serves on the Patient, Quality, and Service and Fall Prevention committees. He is co-chair of the Patient and Family Advisory Council. Steve and his wife live in Seattle.

Biopsy The removal of a sample of tissue or fluid that is examined to see whether cancer is present. This may be done with a large needle or through surgical removal of tissue or fluids. Bone marrow The soft, spongy material in the center of your bones that produces all your blood cells, such as white blood cells, red blood cells and platelets. Bone marrow transplant The process of treating disease with high doses of chemotherapy, radiation therapy or both. Bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells. The process of treating disease with high doses of chemotherapy, radiation therapy or both. Because this treatment destroys the bone marrow’s ability to produce blood cells, bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells. Caregiver A person who gives care to people who need help, such as children, older people or patients who have chronic illnesses or disabilities. A person who gives care to people who need help taking care of themselves, such as children, older people or patients who have chronic illnesses or disabilities. Caregivers may be health professionals, family members, friends, social workers or members of the clergy. They may give care at home, in a hospital or in another health care setting. Chemotherapy Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. It may be given alone or with other treatments. Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. Chemotherapy may be given by mouth, injection, infusion or on the skin, depending on the type and stage of the cancer being treated. It may be given alone or with other treatments, such as surgery, radiation therapy or biologic therapy. Chest X-ray A type of high-energy radiation that can go through the body and onto film, making pictures of areas inside the chest, which can be used to diagnose disease. An X-ray is a type of high-energy radiation that can go through the body and onto film, making pictures of areas inside the chest, which can be used to diagnose disease. Chromosome Part of a cell that contains genetic information. Except for sperm and eggs, all human cells contain 46 chromosomes. Computed tomography A procedure that uses a computer linked to an X-ray machine to make a series of detailed pictures of areas inside the body. The pictures are used to create three-dimensional (3-D) views of tissues and organs. A procedure that uses a computer linked to an X-ray machine to make a series of detailed pictures of areas inside the body. The pictures are taken from different angles and are used to create three-dimensional (3-D) views of tissues and organs. A dye may be injected into a vein or swallowed to help the tissues and organs show up more clearly. This scan may be used to help diagnose disease, plan treatment or find out how well treatment is working. Hematologist A physician who specializes in diseases of the blood and blood-forming tissues. Oncologist A physician who has special training in diagnosing and treating cancer. Some oncologists specialize in a particular type of cancer treatment, such as treating cancer with radiation. A physician who has special training in diagnosing and treating cancer. Some oncologists specialize in a particular type of cancer treatment. For example, a radiation oncologist specializes in treating cancer with radiation. Prostate-specific antigen test A laboratory test that measures the amount of prostate-specific antigen (PSA) found in the blood. Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores. Stem cell A cell from which other types of cells develop. For example, blood cells develop from blood-forming stem cells. Steroid A type of drug used to relieve swelling and inflammation. Some steroid drugs may also have antitumor effects. Symptom A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. Some examples of symptoms are headache, fatigue, nausea and pain. Ultrasound A procedure that uses high-energy sound waves to look at tissues and organs inside the body. The sound waves make echoes that form pictures of the tissues and organs on a computer screen. A procedure that uses high-energy sound waves to look at tissues and organs inside the body. The sound waves make echoes that form pictures of the tissues and organs on a computer screen (sonogram). Ultrasound may be used to help diagnose diseases, such as cancer. It may also be used during pregnancy to check the fetus (unborn baby) and during medical procedures, such as biopsies. Also called ultrasonography. Prostate-specific antigen A protein made by the prostate gland and found in the blood. Prostate-specific antigen blood levels may be higher than normal in men who have certain prostate diseases or conditions.

A protein made by the prostate gland and found in the blood. Prostate-specific antigen blood levels may be higher than normal in men who have prostate cancer, benign prostatic hyperplasia (BPH), or infection or inflammation of the prostate gland.