Sarah Kaufmann-Fink recently participated in Move MMORE* 5K & 1 mile Run/Walk and she is an example of someone who pays it forward.
Sarah Kaufmann-Fink was diagnosed with multiple myeloma in 2005
In 2005, 22 year-old Sarah Kaufman graduated college and went around the world. Like a giant roller coaster ride, this was the same year she was diagnosed with a rare blood disease that was believed to occur in people 60-70 years old. For a young woman not yet in her prime, she felt her dreams of making it big in UN and become the next Kofi Annan seemed to crumble.
Sarah was struck by a rare blood cancer called multiple myeloma.
Being the fighter that she was, Sarah confronted the cancer head-on and went thru radiotherapy, chemotherapy and had a bone marrow transplant in December 2005. At that point, she decided not to let the cancer stop her from achieving her dream.
Now, Sarah is in remission and her dreams of saving the world has taken a different perspective. She left her nonprofit job to study and became a nurse, a career that enables her to help, support patients who are fighting the same battle she had and maybe see that there is a cure for it.
Hers was not an ordinary journey. Her battle against myeloma was one that required strength of will, courage and faith. And she survived it.
But what is really this almost unheard-of disease all about? How does this affect a patient ‘s health? And do patients who get this still have a shot at normal life?
In a 2008 booklet on Multiple Myeloma, the number of patients with this cancer were expected to be at a little over 20,000. Today, Americans have a 1 in 149 odds to contracting the blood cancer. Multiple Myeloma is the second most common cancer of the blood; which means it is also one of the cancers that scientists are looking for a cure for.
Multiple Myeloma Explained
Multiple myeloma is a cancer of the plasma cells, a type of white blood cell that manufactures the antibodies. Plasma cells are also found in the bone marrow. This blood disease is often diagnosed in people over the age of 65 and are found more in male than female. Myeloma develops in 4 per 100,000 people year and is more common in men and is twice as common in African-Americans as it is European-Americans. There are exceptions to the age, gender and race criterion but they are few.
Normal plasma cells are found in the bone marrow and they make antibodies that help the body attack and kill the germs. When these plasma cells multiply while the old cells grow out of control and become cancerous, these become a tumor called plasmacytoma. If there’s only one plasma cell tumor, it’s called solitary plasmacytoma. Over time, they form several plasma cell tumors, that’s why it’s called multiple myeloma.
Multiple myeloma is also called Kahler’s disease, named after Austrian physician Otto Kahler who is best known for his accurate description the disease.
In Kahler’s disease, a group of plasma cells becomes cancerous and multiplies, making the plasma cells reach a higher than normal level. The bone marrow normally is made up of less than 5% of the blood cells.
The overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells. Since these cells are the ones responsible for making proteins, the level of abnormal proteins in the blood also go up. This result to a number of health problems that can affect your immune system, kidneys, red blood cell count and bones.
Signs and symptoms
The initial symptoms of multiple myeloma often go unnoticed because they are often ambiguous and non-specific. Approximately 20% of patients have either mild or no symptoms at the time when they are diagnosed. Doctors usually run a battery of tests to officially diagnose that a patient had multiple myeloma.
The most common symptom which affects almost 70% of patients is bone pain. There are two major kinds of bone cells that work together to keep our bones healthy and strong: the osteoblasts, which are the cells that lay down new bone; and the osteoclasts, which are the cells that break old bone.
When you have multiple myeloma, the cells make a substance that orders the osteoclasts to speed up the dissolving of bone while osteoblasts don’t receive a signal to put down new bone. Therefore, the old bone is being destroyed without new bone to replace it. This can cause bone weakness as any bone in the body can be affected. This disease can also cause osteoporosis. Worse, sometimes bones break from only a minor stress or injury.
When bones become destroyed, calcium is released into the blood. Too much calcium in the blood, or a condition called hypercalcemia, can cause loss of appetite, thirst, fatigue, nausea, confusion and muscle weakness.
Myeloma protein can damage the kidneys and this is a common complication among multiple myeloma patients. Signs of kidney damage can be detected through a blood test. When the kidneys begin to fail, they lose the ability to dispose of excess fluid, salt, and body waste products. This results to symptoms such as shortness of breath, itching, weakness and legs swelling.
Multiple myeloma patients must take plenty of fluids – between two and three quarts a day – to keep the kidneys work properly and to prevent damage.
Since having myeloma disease restricts the body’s white blood cells to function, patients are more prone to get infections. This is because the body cannot produce the proper antibodies that help fight infection. A patient with myeloma may be slow to respond to treatment and may get sick for a long time if he gets an infection.
The overgrowth of plasma cells in the bone marrow can crowd out normal all blood-forming cells that leads to low blood counts. Thus, there would be shortages of red blood cells, platelets, and white blood cells.
A low number of red blood cells is called anemia. This causes weakness, shortness of breath, dizziness and reduced ability to exercise. When you have very few white blood cells, you’ll have a condition called leukopenia, where you will have lower resistance to infections such as pneumonia. When you have very low platelets, you have a condition called thrombocytopenia, where even minor cuts or bruises can cause serious bleeding. This is because there’s not enough platelets in your body to help blood to clot.
Nervous system symptoms
Myeloma cells produce abnormal proteins that can be toxic to the nerves. The effects are weakness and numbness. There are even some cases in patients when large amounts of myeloma protein can cause hyperviscosity. This happens when blood thickens and can slow blood flow to the brain. This causes confusion, dizziness and stroke-like symptoms.
Multiple Myeloma Explained
Nearly 22,000 people are diagnosed with multiple-myeloma each year in the United States.
Myeloma patients are cared for by a team of healthcare professionals that is led by a haematologist who specializes in myeloma.
There is currently no cure for multiple myeloma but treatments come in various ways. There are two main goals in the disease’s treatment:
- to bring the condition under control using different combinations of anti-myeloma treatments that eliminate the cancerous cells from the bone marrow
- to treat the symptoms associated with the disease
1. To bring Multiple Myeloma Under Control
Not all myeloma patients will need immediate treatment if their condition is causing no problems. But these patients will still be actively monitored for signs that the cancer is starting to create problems.
For those who need treatment, initial treatment may either be non-intensive or intensive. Non-intensive treatment is given to older or less fit patients. Example is a patient over 70 years old.
Intensive treatment is for younger and fitter patients. Example is a patient under the age 60.
It is important to note that both intensities of treatment are efficient, but intensive treatment is considered too toxic for older and less fit patients. Patients who need treatment will start with a combination of 3 anti-myeloma drugs that all work effectively together in killing myeloma cells.
2. Treat the symptoms
Among the things one patient can undergo to treat the symptoms of multiple myeloma are radiotherapy, bisphosphonates, blood transfusion and plasmapheresis.
Radiotherapy involves directing high-energy waves of radiation at bones that have been destroyed by cancerous cells. This is used to help relieve bone pain as the radiation decreases the number of cancerous cells in the bone and gives the bone a chance to repair itself.
Bisphosphonatemedication is used to prevent bone damage and lower the levels of calcium in your blood.
Blood transfusions are required by multiple myeloma patients who have anemia. When they have very low red blood cell count, patients easily get tired because there’s not enough oxygen in their body.
Treatment with erythropoietin (EPO), a substance that activates the production of RBCs, is also given by injection for one-three times per week. Treatment with EPO reduces the need for blood transfusion because it effectively increases levels of hemoglobin.
Plasmapheresis is the removal and treatment of blood from blood circulation. Hyperviscosity syndrome, or the thickening of the blood, rarely happens to myeloma patients. Plasmapheresis is done to remove the excess monoclonal proteins responsible for the increased viscosity.
With the advancement of medical studies and technology, treatments for multiple myeloma have become widely available. These treatments are aimed to prolong and optimize the quality of a patient’s life.
Reviewing our question above, Do patients who get this still have a shot at a normal life? Lots of testimonials from patients strongly suggest that YES, patients still can have a shot at normal life.
Getting hit by the disease is something we cannot predict or avoid, but we do have a choice of making the most of what life gives us. Just like what Sarah did.
Though multiple myeloma caused her to be physically weak for some time, it didn’t hinder her from pursuing bigger dreams. She may not have followed her original dream of leading the United Nations, but she is treading a much more fulfilling path she created for herself.
Sarah is now a registered nurse and her family started MMORE or Multiple Myeloma Opportunities for Research and Education in 2008, a nonprofit corporation dedicated to raising awareness and funds for the rare disease.
Sarah is one of the many other myeloma patients around the world who live to tell a story about victory and compassion. Victory over a disease that almost killed her hope, and compassion for people who share the same fate as hers.
Multiple myeloma can weaken your muscles, but let’s not allow it to crush your spirits!