May 2023

Allison Walsh

We are all drawn to stories.

Journeys of one kind or another are almost always framed in story format with its familiar beginning, middle and end.

What makes some so compelling are their depictions of heroism, struggle, stamina and courage often in the face of impossible odds or dangerous situations. (Think Amelia Earhart flying solo across the Atlantic, the Prophet Moses leading the Exodus of the Israelites out of Egypt or Neil Armstrong the first moonwalker).

I’m convinced that our myeloma stories, while perhaps not quite as thrilling, redemptive or Nobel prize worthy, have the same universal human experience of facing your fears, and risking failure to emerge stronger than you ever thought you could be. 

My name is Allison Walsh. I was born and raised in what were the suburbs of Toronto with my parents and 2 sisters, interrupted for a time with a couple of jaunts to Australia and the West Indies, but that’s another story for another time. My husband Mark and I moved to Kitchener in 1990 about 4 years after our wedding. This was the beginning of the massive growth of Toronto and surrounding areas, and we decided we needed a bigger home in a smaller city with more space as our family grew. Kitchener-Waterloo beckoned.

At the time of my diagnosis in 2017, I was 59 years old and 2 years into my retirement from teaching. 

In the spring of 2017, I began experiencing some nondescript symptoms that were hard to explain or source. Maladies such as back aches, headaches, and some intestinal discomfort including some spotty bleeding from my rectum. These disturbances resulted in a diagnosis of colitis from a gastroenterologist. I was given steroids. 

While the bleeding stopped, the back pain intensified to the point where I could not get out of bed. A trip by ambulance to the emergency department did not shed any light on the source of my intense pain and I was sent home with some painkillers. This would happen again, before finally, on a follow-up visit to my gastroenterologist’s office, my back pain intensified to such an extent that I was only able to hobble, doubled up in excruciating pain. She knew colitis was not the whole story, called an ambulance and packed me off to the emergency department of our local hospital cautioning me not to let them send me home. 

At first, the on-call doctor said it was osteoporosis. I think what complicated the clinical picture was that I arrived by ambulance from the office of a gastroenterologist with a diagnosis of colitis. I believe everyone was looking for something related to this to explain my pain. 

While I was never told what stage of MM I had, I later learned that I came very close to requiring a complete blood transfusion. I had it bad. As a result of my severe compression fractures, I had a kyphoplasty which is a procedure that injects a special cement into your vertebrae to help restore its height and to reduce pain. 

Enjoying life, 2018

Cancer patients are often encouraged to participate, to the extent possible, in all of our former interests and activities and to think of cancer as only a part of ourselves and not the sum total of our new identity.

I know this sounds Pollyannish, but I say this, not in an attempt to minimize the significant impact cancer has on the lives of patients, caregivers, family and friends but only to stress the importance of finding ways to live despite the restrictions cancer imposes; to find ways to feed your spirit in whatever way that looks for you.

Luckily for us, my wonderful oncologist embraced this philosophy too, and she agreed to make arrangements with the oncologists at the Cancer Treatment Centre at the Queen Elizabeth Hospital in Charlottetown. Her kindness and concern for not only my physical health, but my spiritual and mental health, was truly a gift. 

Dec 2017 - post stem cell transplant

At first, I appreciated the buzz and renewed energy that the synthetic steroid dex brought me. There wasn’t anything I couldn’t accomplish on ‘dex days’ and our home never looked cleaner. However, it soon lost its novelty and appeal, despite its benefits, as I struggled with insomnia and mood swings. 

Sometime during the winter of 2019, I began to lose weight, rather rapidly, and was constantly tired and rather low in spirits. It turned out that I had Grave’s disease (essentially an overactive thyroid gland). I began seeing an endocrinologist who monitored me closely. After 2 biopsies revealed some nodules with atypical cells, I was placed on a surgical wait list for the removal of my thyroid. It took 2+ years for my turn, and I was relieved to have it removed in November 2022. 

In April 2020, while waiting for my thyroidectomy, my bloodwork revealed that biochemical progression had begun. In common medical parlance, I had relapsed and had become refractory (non-responsive) to my current treatment for MM.

In the telephone call that ensued, my oncologist wondered if I would consider a referral to Princess Margaret Cancer Centre for a stage 3 clinical trial researching the benefits of an investigative treatment called Chimeric Antigen Receptor (CAR)

T-cell therapy. She wanted me to consider this trial as a treatment option and not as my last chance at survival.

I was excited about this opportunity and readily agreed to exploring this option further. Myeloma Canada publishes an InfoGuide entitled Clinical Trials as a Treatment Option. It guides you through the decision-making process and is a must read if clinical trials are something you’d like to consider.

Thus began my eligibility odyssey. As is the case in most, if not all, clinical trials, it is necessary to undergo an extensive battery of tests to ensure that you meet the eligibility criteria for participation. This is important for your safety and the safety and effectiveness of the investigational therapy, in this case, called bb2121 (CAR T-cell therapy). My assessment began June 1, 2021, and by the time I was done, there was simply nothing left of me to measure. Some of the more atypical tests included: Brain, MRI, ECG, full-body skeletal X-ray, hepatitis antigens, HIV, syphilis, and pregnancy. Although it was tiring and long, I appreciated the thoroughness of my medical team and their commitment to my care.

The clinical trial consisted of 2 arms, only one of which, ARM A, is the experimental group (i.e., the one receiving CAR T-cell therapy). The other is ARM B, the control or, standard of care group (i.e., those receiving a drug regimen consisting of the current available treatment for MM). As luck would have it, I was randomized to ARM B, the standard of care group. I felt keenly disappointed and wondered if the inconvenience and bother of frequent travel to downtown Toronto was worth it, given I would not be receiving this novel and potentially curative treatment, or at least not right away. 

In an effort to cheer me up, Mark joked that at least my brain wouldn’t be exploding. (He was referring to the critical risks and side effects that can be associated with CAR T treatment such as Cytokine Release Syndrome (CRS), and neurologic changes such as confusion, disorientation, seizures, and seizure-like activity.) And so buoyed by my husband’s sardonic wit, I began ARM B. I received a combination of 3 drugs an infusion of Elotuzumab (another type of monoclonal antibody like Daratumumab), Pomalidomide (an Immunomodulatory drug like Revlimid) and the ubiquitous Dexamethasone.

It seems important at this juncture to explain briefly what CAR T-cell therapy is. I would actually like to refer you to an excellent 2-minute video on Myeloma Canada’s YouTube channel called The Multiple Myeloma: CAR T (also accessible through their Resources tab) which explains it simply and concisely. Basically, chimeric antigen receptor (CAR) T-cell therapy involves the genetic manipulation of your T-cells. These are a kind of white blood cell that forms part of your body’s immune system. Your own T-cells are not able to recognize multiple myeloma cancerous cells as foreign. CAR T-cell therapy involves modifying your own homegrown T-cells so that they can recognize a protein called B-Cell Maturation Antigen (BCMA), which your multiple myeloma cells carry on their surface. The bb2121 T-cells would then become activated to destroy the multiple myeloma cells. 

On Jan 12, 2022, I said goodbye to my usual myeloma treatment, and all medications were discontinued to clear my system. My immune cells, which include T-cells, were first extracted in a procedure called leukapheresis. The process reminded me very much of the extraction of my stem cells during my SCT of 2017. During this procedure, blood is collected through a venous access (PICC line) and processed through a blood processing machine to remove the immune cells instead of stem cells as is done with a stem cell transplant (SCT). The rest of my blood was returned to me through the IV access in my arm.  

Next step was to receive 3 days of lymphodepleting chemotherapy. I was given an infusion of cyclophosphamide and fludarabine. Their purpose was to remove some of my own immune cells, making space for my new supercharged bb2121 T-cells to grow in my body and to increase my body’s ability to accept them. 

Feb 1: Infusion day

Hurray! Luckily, I had no side effects from the lymphodepleting chemo, and I was admitted to hospital the afternoon before my infusion. I was given meds to reduce any potential side effects from the return of my new T-cells which took place in a one-time infusion. I was followed very carefully in hospital throughout the entire process for a minimum of 2 weeks. 

For me, my CRS was considered mild-moderate. It required treatment with Tocilizumab (suppresses the immune response) and IV fluids and cleared up in a matter of days. Once I was discharged, we needed to stay close to the hospital for weekly visits and daily phone calls; a dedicated person had to be with me at all times.

Recovering on the deck in PEI from overdoing it in the garden. Back pain still troubles me sometimes. 

Today

We hope you enjoy meeting our 2023 Spotlight Stars and your fellow Myeloma Canada community members. 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 recognize that everyone’s journey and experience with myeloma is different.

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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Myeloma Canada's mission: To improve the lives of Canadians impacted by myeloma through awareness-building, educational efforts, advocacy, fostering an empowered myeloma community and support of clinical research so that a cure may be found.