I’m wondering if you know of Multiple Myeloma (MM). Why do I want to know, you ask? Well, my reasons for this article are to raise awareness of this cancer and to encourage you to make donations to Myeloma Canada.
There are over 7,500 Canadians with multiple myeloma and, every day, 7 more are diagnosed. It is the second most common blood cancer out of three main types: leukemia, lymphoma and myeloma. It is located in the plasma cells of the bone marrow and is incurable-but increasingly treatable. The cause remains unknown. Diagnosis is difficult as often it causes no symptoms until it reaches an advanced stage. The sooner the diagnosis and treatment, the better the outlook. Myeloma is fairly rare before the age of 40 and is more prevalent in men. Known risk factors are: farming, history of MGUS (blood characteristics of myeloma but no active disease), family history of myeloma, and being obese. As in other cancers, there are different types and stages of this cancer. Active myeloma patients can develop complications such as anemia, kidney failure, or excessive levels of calcium in the blood. Lesions weaken the bones, cause pain and increase the risk of fractures. Myeloma survival depends on many factors. These are the bare facts of MM.
Living with multiple myeloma is not easy. A diagnosis of MM is life-changing. It impacts every aspect of your life and very often your family’s life. You have to learn to live with constant pain and fatigue. Since this cancer is not common, most family physicians do not know a lot about the disease and must refer you to specialists (oncologist, hematologist, etc). It is a very complicated disease and there’s a lot to learn about it. You have to educate yourself to make the right decisions about treatment options. Learning about the results of your blood tests (often monthly) and understanding what they mean is a tedious task. Often, after being in remission, you relapse and must again decide with your oncologist which chemotherapy to opt for by considering the side effects and the toxicity of the medications. You may also have to decide if you should get a stem cell transplant, participate in clinical trials and/or take maintenance therapy. Side effects of medications are always a worry - bone and nerve pain, fatigue, neuropathy, addiction, depression, etc. Now all this is getting really depressing, but I must tell you more.
Myeloma patients must be their own advocate as this is one of the most important things you can do to help yourself. For example, Revlimid (lenalinomide) which is recognized as one of the most effective treatment for myeloma was approved in Canada in 2008. In August 2010, Manitoba became the 8th province to approve Revlimid funding. Without a year-long campaign executed by a team headed by Maggie Leask (herself a myeloma patient), we might still be waiting for this approval! Kudos to Maggie’s team - my heroes as this medication has put me in partial remission! But, you must still qualify to receive this very expensive medication. The drug approval process in Canada is long. Each drug must go through a rigorous approval process by Health Canada as it does not look solely at whether a new agent is safe, but at the balance between risks and benefits. The pan-Canadian Oncology Drug Review (set up by the provincial Ministry of Health) must also make an evaluation. The provincial drug plans make their own decisions as to which medications they will or will not list. As a result, the coverage of new agents often varies across the country. In some cases, the decision as to whether to pay for the drug is made on a case by case basis.
Myeloma Canada also worked hard for this approval. It is the only national non-profit charitable organization exclusively devoted to the Canadian myeloma community. Their mission is to: provide educational resources and support to patients, families, and caregivers; increase awareness of the disease; 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. They work in close affiliation with the International Myeloma Foundation, the world’s oldest and largest myeloma organization.
On September 13, 2015 there will be a Manitoba Multiple Myeloma March at the Norwood Community Centre, 87 Walmer Street, Winnipeg. We need your support to reach our goal. Funds raised last year helped Myeloma Canada to fund many worthwhile research projects and programs. In fact, in 2014 Myeloma Canada’s research grant was awarded to Manitoba’s own Cancercare Research Lab (headed by the dedicated Dr. Sabine Mai) at the Health Science Centre. This is the second time in the last five years that a Winnipeg Researcher has received this grant money. Please do check out this site: www.myelomamarch.ca then click on Winnipeg. There you may register for free, sponsor a participant or a team, join a team or make a donation to the event. Any donation of $20 or more made on line will be issued an official receipt immediately. My team is The Honeybees. You and your friends are more than welcome to join us or sponsor us. Every donation, however small, is greatly appreciated.
There is only one MM support group and it is in Winnipeg. We are trying to find out if there would be a need for such a group in southwestern Manitoba. Feedback would really be appreciated. Therefore, please feel free to contact me for more information about myeloma or the MM March. Hopefully, I can point you in the right direction for answers. I am a MM patient diagnosed with high risk myeloma in 2013. I am in partial remission since May 2014.
Please DO try to make your donation to the Manitoba MM March before September 13th. We need to raise $350,000 nationally and at the moment, Manitoba is in the lead.
For more information contact C. J. Bazin Sala at 204-248-2024 or firstname.lastname@example.org.