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Spotlight on Nancy Shamanna |
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Looking back on how Myeloma Canada helped me in my journey |
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Myeloma Canada, the national organization that is dedicated to helping patients and caregivers, as well as promoting scientific research in myeloma, and advocacy, has just ended its 15th anniversary celebration year.
As a multiple myeloma patient diagnosed in 2009, I have been involved with Myeloma Canada for the last eleven years. I have followed their growth and development with interest in all of that time.
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My first contact with them [Myeloma Canada] was at a jointly held conference in Calgary with the Southern Alberta Myeloma Patient Society (SAMPS), in September 2009. My husband and I had recently met Carole Westberg and Norma Gilbert, who founded our local group, and we learned about the conference from them. We all sat in a large audience in a downtown hotel and listened to talks given by prominent hematologists; one of them was Dr Nizar Bahlis from the Tom Baker Cancer Centre. I was impressed by their knowledge of the disease. Graph after graph showed survival curves from different clinical trials. What I found unnerving was that survival was measured in months, not in years. There was no doubt in my mind that we were in a war with that bone marrow cancer!
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Myeloma was not unknown to me at that time, as it seems to be for many patients. We met a friend, who I knew from a different group, who was suffering and had had a stem cell transplant. We were very fortunate to meet Aldo del Col and John Lemieux then too [the late Co-founders of Myeloma Canada]. We came away from the two day conference thinking that we had been in the company of like-minded people who all had the goal of helping others by increasing awareness and survival of this bone marrow cancer.
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Nancy and her husband at the Vancouver Airport in October 2019, on a trip to Whistler (BC). |
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We went to several conferences after that one, and each time I learned more, and also met people from across the country. After a few years, I was asked to join the national advocacy group, where I have stayed ever since. It has been a real ‘eye opener’ to me to learn about how drugs are approved, then priced and finally made available to patients in our provinces and territories. I have participated in both, letter-writing campaigns and at ‘awareness days’ in Ottawa and in Edmonton. Thanks goes to Myeloma Canada for providing me with these opportunities. |
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As time went on, I became more involved with SAMPS, Myeloma Canada and also the Myeloma Beacon. I write columns for the Beacon, which is an online publication that reaches out to patients with scientific information and patient columns. Although when I was diagnosed with an ‘incurable’ blood cancer in 2009 I was devastated, through becoming involved in this area I have learned a lot and made new friends too. My life took a turn I did not expect, but it has been meaningful in many ways. Throughout this journey, I am fortunate to have had excellent and thoughtful healthcare from my doctors. |
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Everyone’s journey is a bit different from another patient's. My journey has included induction chemotherapy with Velcade plus 'dex' [dexamethasone]; bisphosphonate treatment with Aredia; an autologous stem cell transplant; treatment with Revlimid and 'dex', but not continuously; treatment for breast cancer (I am a four year survivor of that); and currently I am taking a regimen of Darzalex, Revlimid plus 'dex'. |
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Presently, I am healthy but I am immune-compromised due to the medications I take. So, the Covid-19 crisis presents a problem of not wanting to come into contact with that virus. I wear a mask in any public space and avoid going out unnecessarily. Apart from that, I am living quite a normal life and am extremely grateful for that.
Over the years, the concern and kindness of the folks at Myeloma Canada have helped me very much in my journey with multiple myeloma.
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Nancy waiting at the Bone Marrow Transplant clinic in November 2020. |
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I hope that they continue on with their work for many more years! |
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Editor’s Note: To donate to Myeloma Canada, please visit www.myeloma.ca or call us toll-free at 1-888-798-5771.
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