Hope on the Horizon

by Symptom Advice on February 3, 2012

Seventy-year-old Don Wright doesn’t believe in giving up without a fight. Since being diagnosed with multiple myeloma (MM), also known as myeloma, eight years ago, he has become a beacon of light for patients battling the crippling cancer of the plasma cells in bone marrow. While no exact cause has been found to lead to this disease, it does primarily affect elderly folks. the median age of diagnosis is roughly 70 years.

A picture of health, the retired American lawyer has used his passion for running marathons to keep physically fit, controlling the cancer with a clinical trial drug called pomalidomide to give himself a new lease of life. He has been on this drug since March 2008, with positive results. Prior drugs gave him little to no relief.

Wright spoke to Life following his speech at the 53rd American Society of Hematology (ASH) conference in San Diego late last year, where medical experts congregated to promulgate and analyse new treatments for myeloma suffers. He spoke candidly to the audience about how encouraged he was to see fresh developments taking place in the treatments for MM patients. a trial drug has worked wonders for him, he said with enthusiasm, offering him a life he would not have imagined a few years ago.

“I want patients around the world to be emotionally and physically strong to fight this disease,” said Wright. “Trial drugs might not be easily accessible to the masses and might not always work, but that should not put people off from looking after themselves both physically and emotionally.

”Pomalidomide, the trial drug, is working for me. It will not cure the myeloma but it keeps it stable. I want people in my shoes to be encouraged to live and celebrate life. I have a disease but despite that I have a wonderful life. Despite the odds, it is pivotal to have hope. At the conference, doctors talked about a cornucopia of treatments, which are at trial stage, so there is a lot of hope for new cures on the horizon. Life is there to be lived to the fullest despite the impact the disease has had on us both mentally and physically.”

Afterwards, he took time out to run a mini-marathon with a small group. He has competed in 55 marathons in 37 states, while his goal is to compete in 50 states. Wright was diagnosed with myeloma two weeks after running his first marathon in 2003. His doctor_ who gave him a five-year survival estimate _ was always supportive of his running which he believed would strengthen his bones. He decided to continue for the sheer enjoyment of pushing his physical limits to the next level. Admitting that with advancing age and the sickness, he is simply content with reaching the finish line.

Adhering to a healthy lifestyle is a must to boost your chances of fighting the disease, he said. Smoking, obesity and fast food should be kept at bay. Nutritious food is a must, organic is most advised. Exercise of all forms can lift people from depression and stress, he enthused with a twinkle in his eyes. Wright credits good emotional health to a supportive family, a wife and daughter that also participate in marathons with him.

The well-toned athlete calls them his pillar of emotional support. Wright concluded on a poignant note: ”I do realise that I don’t know just when the cancer might deteriorate. But for the meantime, my family and I are relishing the extra time that we have been given to be together. To make the most of it, we have been travelling and doing these running events together to celebrate life.”

Meanwhile, Dr Weerasak Nawarawong, president of the Thai Myeloma Working Group, who also attended the ASH meetings, said that while the experimental drug pomalidomide is not available in Thailand, it is important for Thai patients not to lose hope because many new treatments are being tested to find suitable cures. Judging from all the positive developments that are taking place in the field of blood cancer studies, there is reason to be optimistic about the future.

Despite being diagnosed with multiple myeloma, a treatable yet incurable cancer, Don Wright (foreground, right) has fought tooth and nail to keep it under control through a positive attitude and healthy lifestyle.

He said a number of updates were shared at the American Society of Hematology conference about the treatment of multiple myeloma. one which includes the next generation immunomodulatory drugs pomalidomide, proteasome inhibitors and carfilzomib. Patients taking these drugs, in addition to other experimental medication, tested in no increased toxicity.

In Thailand he said most MM patients are in the age bracket of 60-70 years old. Annually, there are approximately 150 new cases in comparison to 15,000 in the US. Dr Weerasak noted that while myeloma is treatable it yet remains incurable. important treatment advances, however, have developed in higher rates of remission and lengthier survival than were seen in the past. As experts attain a better understanding of the development and progression of this disease, targeted treatment strategies are generating further benefits.

He said that a routine blood screening can catch a number of myeloma cases while it is still in an asymptomatic state. the symptom at the onset of the disease for most Thai patients is bone pain. In those who have pathologic fractures especially fractures of the thoracic and lumbar vertebral bodies, it usually results in severe spasms and back pain. the anaemia, which may be quite severe, is the most common cause of weakness in patients with MM.

Dr Weerasak admitted that while Thailand has kept statistics of the number of myeloma patients through the years, it had not made an epidemiologic study of the disease as such. Due to lack of awareness physicians under-diagnose their patients, he noted. Epidemiologic studies in countries such as China and Korea have given him reason to believe that the number of patients with multiple myeloma in Thailand is increasing steadily.

To raise awareness the Thai Myeloma Working Group organises several functions to educate both physicians and patients on the disease. they also have a website (thaimyeloma.org/th) for patients to obtain information about multiple myeloma. He also hopes that in the near future, they will be able to set up supportive groups for myeloma patients to receive counselling.

Thai myeloma patients can expect medication that is approved worldwide.

”All the anti-myeloma drugs that have been approved for treating multiple myeloma are available in Thailand,” noted the veteran medical expert. ”The success of the treatment is as good as you would find in Western countries if only we can get access to novel drugs, which don’t come cheap. There are numerous determining factors that influence the positive outcome of the treatment. Few examples include age, the advancement of the symptoms and the duration of time that has elapsed before the patient gets the anti-myeloma therapy.

”Novel drugs also have no guarantee and can be expensive. so Thai myeloma patients’ biggest setback can be the ability to purchase these drugs. the government does not also have a big enough budget to cover the expense.”

Dr Weerasak said doctors are looking for appropriate drugs that can be used to maintain the status of remission which is quite successful in some of the sufferers.

He explained that clinical trials are research studies of new treatment methods. Even if you are newly diagnosed with multiple myeloma, he said you might be offered a clinical trial drug. the early phases I and II of the clinical trials focus mainly on a safe dosage level, side effects and type of cancer to ascertain

that the new drugs are working. the phase III trials then determine if the patient is making better progress from the currently available treatment they have undergone. Patients might have to take some risks, such as suffering from adverse effects, so it is up to them to continue or discontinue with the treatment.

Asked to share common causes and symptoms of myeloma, Dr Weerasak explained that as there is no exact cause of MM, there are several risk factors that could lead to the disease. Repeated exposure to chemicals such as pesticides, benzene and spraypaints have been proposed as potential causes.

”Most people with MM have no known risk factors other than age,” he said. ”Scientists have identified a few risk factors for instance, obesity, exposure to radiation or chemicals. Not everyone with risk factors gets multiple myeloma. Myeloma is slightly more common in men than women, and most people are diagnosed in their sixties.

”Symptoms could include frequent low back pain. the pain could nonetheless occur in other areas like ribs, arms, legs and pelvis.

”For patients that develop anaemia, they will have paleness, dizziness, weakness, fatigue and shortness of breath. Infections such as pneumonia, sinusitis are frequent. Weakness or numbness in your legs might be the result of spinal cord compression. Unexplained weight loss is common. High calcium levels cause excessive thirst, nausea, constipation, loss of appetite and confusion. Swelling, especially in the legs, along with weakness are symptoms of kidney failure.”

Best prevention methods are to keep healthy through having a good diet, exercise to enhance your physique, observe good personal hygiene to prevent infection and avoiding smoking and alcohol. Exposure to toxic chemicals and radiation is believed to increase the risk of multiple myeloma and other cancers, so keep this in mind and avoid being around these substances for long periods of time. Regular medical examinations for early detection and timely treatment is always advisable.

Photojournalist Ed Kashi captures the lives of patients suffering myelodysplastic syndromes, a group of closely related but diverse blood cancers, which also affect the aged.

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