The mission of Myeloma Atlantic is to inform the public about the issues surrounding multiple meyloma. It is also to inspire Canadians to be more active in idnetifying the needs of Patients and the medical professionals who assist us in our fight against cancer.
Following the Myeloma Canada Information Workshop held in Halifax on June 10, many in attendance expressed the need to have a local support group. Julie Salsman and Trish MacDonald agreed to take on the challenge and have led the formation of the Nova Scotia Multiple Myeloma Support Group.
The next group meeting will be on September 13, 2010 starting at 7:00 pm at the Atlantic Superstore in Lower Sackville, NS
For additional information, please contact Trish at (902) 678-9378 or Julie (902) 462-8670; otherwise at:
The author is a member of the IMF Nurse Leadership Board (NLB) AND A LEADER OF THE NLB Functional Mobility and Safety task force, answers questions about optimal functioning, fall risk and plan activity for newly diagnosed multiple Myeloma patients, patients undergoing treatment and long term survival Mobility challenges vary among survivors but problems with a lack of mobility or activity affect the quality of life and also may be a hindrance to continuing treatment. This article can be found at Page 12 in the publication Myeloma Today Summer 2010 Volume 8 Number 3
Sandra Rome
MOBILITY AND SAFETY INTHE MULTIPLE MYELOMA SURVIVOR
Myeloma Today in conversation with Sandra Rome
The NLB manuscript is being prepared for health care professionals. What can you share with the patients and caregivers who read Myeloma Today?
People with myeloma are surviving longer due to newly available treatment options. Not unlike other cancer survivors, long-term myeloma survivors must deal with issues that include treatment, recovery from therapies, and the effects of the disease itself. Optimal functioning is key to the quality of life of long-term myeloma survivors.
Multiple myeloma causes anemia and bone disease in as many as 90% of patients. The impact of the side effects at diagnosis and throughout treatment includes decreased mobility, pain, metabolic disturbances from bone loss, neurological compromises, weakness, and fatigue. Mobility challenges vary among survivors, but problems with a lack of mobility or activity affect quality of life and also may be a hindrance to continuing treatment.
The purpose of my section of the NLB Survivorship Care Plan is to provide the health care professional with information on mobility, fall risk, and planned activity as an integral part of the myeloma patient’s plan of care. The intent is to provide tools for nurses and physicians assessing and evaluating the newly diagnosed myeloma patient, the patient undergoing treatment, and the long-term survivor.
Patients with myeloma may experience physical changes related to treatment. Some of these changes include peripheral neuropathy, muscle wasting, fatigue, and gastrointestinal problems. These, along with other patient factors, may interfere with daily mobility, safety, and the ability to function safely.
Myeloma patients have particular risk factors related to falls as compared with other individuals ≥ 65 years, regardless of their health status. A myeloma patient may have one or more fall risk factors (e.g. visual problems, orthostatic hypotension, gait and balance problems, medication side-effects, and degenerative joint disease), so a single factor might not necessarily predict a patient’s risk for falling. Given the bone problems in myeloma, falls more frequently lead to bone fractures.
What are the recommendations of the NLB regarding mobility?
We recommend that an evaluation of the patient’s baseline history and physical assessment is performed with a focus on neurologic function, muscle strength and balance, and visual acuity. Laboratory tests and other health conditions and medications should be reviewed in terms of the impact on the patient’s functioning. MRIs or other imaging studies may be indicated prior to prescribing an exercise program. Bone density scans are beneficial for evaluation at diagnosis and annually for guiding the use of bisphosphonates, a class of drugs that prevent the loss of bone mass. Since a patient’s condition can change over time, it is crucial that baseline as well as ongoing assessment be performed at every encounter with the healthcare team.
What are some NLB recommendations regarding physical activity?
Planned physical activity and/or exercise should be part of an overall health program that includes nutrition, weight management, and potential complementary therapies, such as support groups. All assessments prior to an activity or exercise plan should include patient’s previous activities and exercise preferences, which may be unique and varied.
There are three types of exercise: aerobic, resistance, and flexibility. The choice of exercises depends on the person’s goals, health status, exercise history, and cancer experience. Studies with myeloma patients have included an aerobic component, usually walking, but in some instances, running or cycling plus strength resistance training using exercise stretch bands.
Activity may improve physical fitness, which may improve physical functioning. Studies have shown the feasibility of exercise in all categories of cancer survivors. The benefits of adequate physical functioning and exercise have been shown to have physical as well as psychological benefits. Physical activity has been shown to improve cardio-respiratory fitness during and after cancer treatment, symptoms and physiologic effects during treatment, and vigor post-treatment.
Positive effects of exercise in cancer patients include improved sleep quality, mood, overall quality of life, functional and physical measures, as well as a reduction in cancer-related distress and cancer-related symptoms. Emotional benefits, such as decreased tension, depression, irritability, pain, and fatigue, and higher levels of invigoration and relaxation have been observed with moderate stretching exercise, such as yoga. Exercise may improve treatment completion and possibly reduce toxicity. It may help patients with advanced-stage disease improve physical strength and health, reduce fatigue, and improve emotional status.
Exercise intervention studies in myeloma survivors who participate in exercise programs show that it can be done safely. Even myeloma patients undergoing aggressive treatment, such as a stem cell transplant, can safely participate in an individualized strengthening and endurance exercise program.
It is clear that improvement in functional ability, strength, and balance reduces an individual’s risk of falling and having a fall-related injury. For patients with mobility problems and potential risk of falling, the following should be specifically addressed:
• Immediate needs for safety (hospital fall-precautions program, in-home assistance, use of assistive devices)
• Treat or manage the underlying disorder or problem, e.g. neuropathy
• Adjust medications
• Recommend an exercise program that includes training in gait and balance, and stretching
• Assessment and modification of daily routines
• Safety of home environment
What precautions should be considered?
Patients need to be educated as to when they need to modify or abstain from their exercise regimen. For example, when they have a fever, patients should avoid group participation; if they have low platelets, a greater concern for strenuous activity and maintaining security of balance needs to be emphasized. Patients with balance problems may need to use a chair or wall for balance
.
Patients must be cautioned to listen to their own bodies and abstain from activities that cause discomfort. Clinicians should recommend safe activity as part of the plan of care for every patient. On the one hand, a patient who had been active previously may not want to adhere to restrictions such as calling for help or using a walker. On the other, a sedentary individual may not understand the importance of exercise on bone health. Safe mobility and physical activity programs need to be tailored to the needs of each individual patient.
In any setting, the immediate need for patient safety (e.g. prevention of falling) should be the priority, and the patient’s environment should be assessed and modified to maximize safe mobility (e.g. rug placement, handrails, and grab bars).
What about ongoing assessment and readjustment?
Cancer rehabilitation is seldom linear; myeloma survivors may have varied problems and symptoms over time, such as pain, neuropathies, etc. Ongoing patient assessment of risk of falling, physical activity, medications and their side-effects, laboratory and diagnostic tests, nutrition, and adequate management of other health issues is essential.
Maintaining a weekly exercise log helps patients track the frequency, intensity, and duration of the exercises they perform. Based on patients’ documented exercise performance, programs could be altered to best accommodate their physical functioning (e.g. if the patient is feeling very fatigued the intensity of the exercises can be lowered accordingly).
Any closing comments?
Whatever is recommended or endorsed as exercise or activity needs to be carefully evaluated by the patient’s healthcare providers. Patients and their family members should be instructed to tailor the patient’s activities based on daily health status and communicate with the healthcare team regarding any questions or concerns they might have
There are two provinces holding out: Nova Scotia and Prince Edward Island and they excuse themselves saying the drug is too expensive. The old question comes back: What is the value of a human life?
I have been receiving Revlimid due to the generosity of the manufacturer Celgene and it has been saving my life. (Ed)
Manitoba last week became the eighth province to approve funding for Revlimid® (lenalidomide) in combination with dexamethasone, as second-line therapy for the treatment of patients with multiple myeloma.
In October 2008, Health Canada approved Revlimid in combination with dexamethasone for the treatment of multiple myeloma patients who have received at least one other treatment regimen. Prior to the drug’s approval, there were few effective, once-daily oral treatment options for patients with this aggressive blood cancer.
Notwithstanding overwhelmingly positive clinical evidence, Nova Scotia and Prince Edward Island remain the only provincial holdouts denying access to patients who do not have private drug insurance, but who require Revlimid. Myeloma Canada, together with local support groups, will continue the campaign to force decision makers in these two provinces to follow the lead now set by every other Canadian province.
John Lemieux, President of Myeloma Canada stated, "Manitoba’s unique requirement for a Utilization Management Agreement slowed the process, but the government has now made the right decision. Denying public funding for a critical drug like Revlimid blocks access to a treatment that has been proven to prolong the lives of multiple myeloma patients. Universal access to drugs like Revlimid across the whole of Canada is a core goal for Myeloma Canada. The myeloma patient community won’t accept a patchwork quilt approach to provincial listings of this drug. Nova Scotia and Prince Edward Island will have to come on board."
About Multiple Myeloma
Multiple myeloma, a cancer of the bone marrow, is an incurable but treatable disease. The cancer starts in plasma cells, which are produced in the bone marrow. In myeloma, abnormal plasma cells, called myeloma cells, grow uncontrollably, crowding out the normal blood cells in the bone. This can bring on symptoms such as fatigue, recurrent infections and severe pain resulting from bone fractures. The disease disturbs the body’s balance of minerals and prevents organs, such as the kidney, as well as nerves, from functioning properly. In Canada, approximately 2,000 people are diagnosed with multiple myeloma every year. About Myeloma Canada
Myeloma Canada, the only national organization exclusively devoted to the Canadian myeloma community, is dedicated to supporting people living with multiple myeloma. The mission of Myeloma Canada is to: provide educational resources to patients, families, and caregivers; increase awareness of the disease; accelerate research efforts; and promote improved access to new therapies, treatment options, and health care resources. Myeloma Canada works with regional support groups and key myeloma experts to strengthen the voice of the Canadian myeloma community. Myeloma Canada works in close affiliation with the International Myeloma Foundation, the world’s oldest and largest myeloma organization. For more information or to find out how you can help please visit our website at www.myeloma.ca.
This article below expresses the view of the federal Liberals led by Liberal leader Dion and the position of the federal Conservatives is unclear. This article is intended to get the issue in front of the public as since this position was taken there have been many changes in the cost of providing drugs for Canadian in after care. Added to this list must be Multiple Myeloma. I hope this furthers the debate and as we in Atlantic Canada suffer most under the current arrangements. Our organizations must respond positively and engage our governments so that we do not face the prospect of patients dying because their provincial governments can not or will not provide funding. I am a multiple myeloma patient and the revlimid that keeps me alive is provided though the generosity of the manufacturer Celgene
A plan for catastrophic drug coverage for Canadians
A new plan for catastrophic drug coverage would ensure Canadians living with serious life threatening or chronic illnesses – such as cancer, diabetes, and arthritis and multiple myeloma – can focus on their health instead of worrying about their finances.
All Canadians should have access to the drugs they need when they face serious illness but for many, the needed medications are so expensive or used in such quantities that they cause financial hardship.
More and more new treatments for serious illnesses are oral drug therapies, instead of hospital treatments, and so are not covered under the public health plans in most provinces. While they may be more targeted and effective than older therapies, these drugs are increasingly expensive.
For example:
The average drug treatment for kidney cancer costs between $6,000 to $7,000 per month; It can cost between $40,000 to $60,000 for a standard course of treatment of colorectal cancer; and new, innovative medications for rheumatoid arthritis cost about $20,000 per year.
A new Liberal government will ensure that drug costs are not a barrier to quality health care by creating a $900 million catastrophic drug plan. Creating a plan for catastrophic drug coverage will ensure all Canadians suffering from debilitating illnesses have access to much-needed drugs no matter where they live.
Currently, Canadians receive different coverage across the country depending on the province they live in. There is no minimum standard of coverage. As a result, coverage is not consistent across the country. The Liberal Party does not believe that Canadians should face dramatically different health coverage and financial burdens based solely on geography.
Canadians in the Atlantic provinces face particular hardship. This is unacceptable and betrays the principle of universality that has been at the core of our health policy for decades.
A new Liberal government will work with the provincial and territorial governments, in consultation with health experts and patients, to establish a level of catastrophic drug coverage that should be provided as a national minimum. Provinces that currently provide drug coverage that meet this new standard will be compensated by the federal government. For provinces that do not meet the standard, a new Liberal government will work with the provincial government to ensure that adequate coverage is provided.
Spending on prescription drugs is growing faster than any other category of health expenditures. After hospital care, Canada spends more on drugs than on another major category of the health care system. Since 2000, the total public and private expenditure on prescription drugs has grown by approximately 12 per cent annually. With these increasing costs, provincial health spending is even further stretched and other health programs may suffer.
The federal government will assist the provinces to ensure Canadians across the country have consistent access to drugs.
Provincial and territorial health ministers called for the federal government to provide protection against catastrophic expenses at a meeting earlier this month.
We agree with the provinces and territories that catastrophic drug coverage is as essential to Canadians as physician and hospital coverage and agree that the federal government has a funding responsibility to establish a minimum standard of drug coverage for all Canadians.
I am sure you have considered and looked into how our food affects our health. I have read and loaned out a book by Dr. Roger L. DeHaan entitled We Don't Die; We Kill Ourselves our food is killing us. He has also written a second book "Restoring the Creation Mandate".
I find that physicians don't have any training on nutrition. I am still learning and it seems the more I find out the more there is to learn.
Just thought you would be interested and perhaps could find these books at your library or on line. God still is the great physician and healer and I believe He is using Christians to help us get back to what he intended for us. God Bless.
Linda Charters, St. Stephen, New Brunswick
PS Another book by Steve Meyerowitz on Wheatgrass Nature's Finest Medicine (cleanses, nourishes, rejuvenates, and heals).
My husband and I have been taking Wheatgrass since winter.
The CTV W5 program in which I appeared aired on the CTV network on March 27, 2010. Some say they haven’t seen it; yet some tell me they have seen it many times. The consensus seems to be that the program struck a nerve of accuracy among cancer patients and the Canadian public. The link below will enable you to view it again or for the first time.
If you have any comments you wish to share, feel free to do so on the blog, or make you comments available to me at the Email address below:
Myeloma Canada continues its outreach to patients and caregivers across Canada with the first-ever information workshops to be held in Nova Scotia and Newfoundland. These sessions, which are free and open to the public, provide a valuable opportunity to learn more about multiple myeloma as well as to meet other patients and caregivers.
The editor of Myeloma Atlantic is Frank Boyd. A multiple myeloma patient, Frank's sole aim is to facilitate and improve communication between patients, medical professionals and the public.
