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Spotlight on Kerrie Gagne:
My AL amyloidosis story
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Editor’s Note: The Spotlight section of Myeloma Matters features stories and reflections supplied by members of our community – those living with myeloma, caregivers, healthcare professional – in their words. The views expressed and shared are those of that individual. We hope you enjoy meeting our 2021 Spotlight Stars and your fellow Myeloma Canada community members.
We recognize that everyone’s journey and experience with myeloma is different. If you would like to share your experience in a future issue of Myeloma Matters, please contact us at contact@myeloma.ca.
To all of you who have shared your stories in the past, and those of you who continue to do so today, we are indebted...you are an inspiration.
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This month’s spotlight focuses on Kerrie Gagne, a young woman diagnosed with AL amyloidosis, a very rare systemic disorder that results from abnormal white blood cells, or plasma cells, in the bone marrow, and that is closely related to myeloma. Although some people with myeloma will have or develop amyloidosis, it is rare for people with amyloidosis to develop myeloma. Amyloidosis is usually treated with chemotherapy, using the same drugs that are used to treat myeloma.
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My story began on January 29, 2020, when I went for a cortisone injection in my elbow for an ongoing issue with my right arm that I am still dealing with. I returned to work after that injection and don’t remember much after that because I was taken by ambulance to the hospital. Since then, I have still not returned to work.
I was diagnosed with upper chronic myofascial pain syndrome as a result of my arm muscles deteriorating and my tendons thickening and hardening. I spent a great deal of time trying to strengthen my arm muscles through weekly physiotherapy, chiropractic care, massage therapy, and counselling to help me learn to live with chronic pain.
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In July, I was noticing that my arm was still not getting better and my weight was steadily increasing due to water retention. I kept going back to my doctor and she kept saying that I just have weird things (which seemed to be true over the years). Strange reactions, sudden weight gain and loss, and allergic reactions. She finally agreed to give me water pills (Lasix), which worked fast, and suddenly I felt so much better. I was able to increase my exercise routine again, physio, massage therapy, and chiropractic care.
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By October 2020, everything seemed to be going great and I was almost ready to go back to work until suddenly something happened. I couldn’t breathe properly, as if I was being crushed. My chest felt like it was going to explode and all my veins rose to the surface, making me look like "The Hulk". Off I went to the hospital where they kept telling me there was nothing, that I have chronic pain, and to just go home.
In their eyes, I was a simply a 47-year-old female that had low blood pressure and appeared to look fine. There was nothing alarming showing up in my blood tests other than an abnormal blood protein (which had come up in a previous lab test; my doctor was unaware of the potential looming problem).
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I refused to leave the hospital and asked them for a knife so I could cut open my chest to relieve the pressure. That’s what it took to take me seriously! They finally admitted me. I had a CT scan which showed my heart had water around it. They diagnosed me with endocarditis. After a week in hospital and on medication for the endocarditis, I returned home and tried to get better and stronger.
By December 2020, things seemed fine. I was looking forward to returning to work, but then it happened once again... another trip to the emergency, with the same battle of trying to tell them something was very wrong. I was finally admitted, and this time they finally found something that was pointing towards AL amyloidosis.
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To be sure of their diagnosis, I was told I would need to go to Edmonton to the Cross Cancer Institute for a bone marrow biopsy, and then to Calgary for a cardiac MRI.
On January 7, 2021, while in Edmonton for my bone marrow biopsy, I was told that the biopsy was not enough for a firm diagnosis. I then had a fat pad biopsy, the removal of a small part of the abdominal wall fat pad which is sent to a laboratory so the tissue can be studied. I went home and waited for my results.
This time, I was not so lucky. I had an internal bleed from the fat pad biopsy, my boyfriend at the time decided he no longer wanted to go through this journey with me, and I was still unable to go back to work. As you can imagine, stress and uncertainty were at an all-time high.
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February 10, 2021, the call came in from my hematologist in Red Deer letting me know the results were positive for a rare and incurable blood disease called AL amyloidosis with cardiac involvement. I was to begin targeted chemotherapy with cyclophosphamide, bortezomib and dexamethasone (CyBorD), weekly for the next six months. |
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On March 11, 2021, I had ICD (implantable cardioverter-defibrillator) surgery for my heart due to the amyloid casing (what they call a 'stiff heart'). This does cause some ongoing pain and discomfort due to its size, and because it has shifted slightly.
Now, here we are in July, and as of today, I have three more weeks of chemo which ends July 29th. I don’t know what my prognosis is, but the positive news is that I have had good immune response to treatment. My numbers are undetectable at this time, but I still need to continue to monitor my amyloid levels with regular blood tests.
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Through this whole experience, I have become motivated to be an advocate for AL amyloidosis. It is so important to me to bring awareness to this disease because of its rarity and the struggle for many people to get diagnosed. By advocating, we increase the knowledge of the signs and symptoms of the disease, so that hopefully it can lead to earlier diagnosis, and ultimately save lives.
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I will continue to stay as positive as I can and advocate for AL amyloidosis and other cancers and rare blood diseases in Alberta. Getting the support and information has been a struggle for me for a few reasons: firstly, my age and gender made it difficult to diagnose; and secondly because of the rarity of AL amyloidosis and the limited resources in Canada. One day, I hope to be able to help people like myself to have access to better care and treatment. I would like to further help research in any way I can; this is what I would like my legacy to be.
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My goal in advocating for quicker diagnosis, is to bring awareness to family physicians, lab technicians and medical teams, so that they have the right tools and information they need when they are presented with possible symptoms, such as abnormal blood protein in blood tests or urine tests, muscle wasting or tendon thickening, and ongoing neuropathy issues. |
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I have started advocating through my Twitter handle (@GagneKerrie) and Facebook page (Kerrie L Gagne). I have shared my story and updates with treatments on Facebook. Any time there are other patient stories, new medical information, or breakthroughs that are shareable, I share. I have participated in a Facebook Live event held by Wellspring Calgary, and also did a blog on my story.
Although, I am just beginning, I am trying to learn everything I can about AL amyloidosis so that I can better advocate for myself. I strongly encourage others to share their stories and experiences as a patient or caregiver living with AL amyloidosis, so that we can all learn how to better manage this disease.
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So far through my cancer journey, I have learned how trying and alone it can be at times. I am learning that being involved and active with Wellspring Calgary and the many programs they offer, the LLSC as a first connections volunteer, the Southern Alberta Myeloma Patient Society (SAMPS) and Myeloma Canada has helped me connect and engage with others living with similar challenges. Being a speaker at events for AL amyloidosis and other rare blood cancers has shown me how resilient and strong I can be.
I am determined to live, and to make a difference.
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