IT HAS BEEN ALMOST a year since 65-year-old Phil Arner had a stem cell transplant after living with myelofibrosis for seven years. For his wife Karen, the experience was life changing.

“I knew that a stem transplant was going to be a difficult process for Phil,” she says. “But I had no idea how physically draining it would be on me. I thought I was prepared, but I wasn’t.”

Karen, who is 64 years old, was in Toronto, Ontario, on September 29, 2018, to share her story at the fourth annual Canadian MPN Conference.

Selected as this year’s MPN Champion in the caregiver category, she says that what kept her moving forward was remembering how important it was to take care of herself. “The advice I would share with other caregivers is to be in tune with yourself,” she says. “Exercise to manage stress, reach out to people who care about you, take any help offered and keep hope alive, no matter how difficult.”

For 74-year-old Edward Pascal, recognized as an MPN Champion in philanthropy, the biggest challenge after he received a polycythemia vera diagnosis in 2004 was lack of information.

“I discovered that the awareness of MPN was very limited. Diagnosis was frequently not available, and neither was access to treatment by a hematologist,” says Pascal, who supported the founding of the MPN clinic at Jewish General Hospital in his hometown of Montreal.

“The importance of patients being their own advocates for MPNs with other patients cannot be understated,” he says. “There is tremendous value in sharing our experiences.”

Pascal, together with the McGill University’s Faculty of Medicine, Continuing Professional Development Office, also helped develop an MPN educational module as part of the oncology courses for practicing physicians, medical students and other health-care professionals to foster awareness of MPNs and improve patient outcomes.

Given Pascal’s passion for education and awareness, it makes perfect sense that he would also be involved in the establishment of the newly formed Canadian MPN Research Foundation.

“The foundation will serve as a platform to discover new treatments for MPN patients, prolonging their lives and hopefully finding a cure,” he says. Pascal isn’t the only one working to improve patient access to MPN expertise. Two years after his wife Elizabeth was diagnosed with myelofibrosis, Tony Comper established the Elizabeth and Tony Comper MPN Program at Toronto’s Princess Margaret Cancer Centre to focus on advancing research and improve outcomes for people with an MPN.

As he accepted his award recognizing him as an MPN Champion in the category of philanthropy, Comper said that his wife, who passed away at the age of 69, received comprehensive care. But he noticed that her doctor, Vikas Gupta, MD, FRCP, FRCPath, had relatively little support because of a lack of resources, which are often allocated to more common diseases.

“Before my wife passed, it was her desired intention that we provide support to allow Vikas and his colleagues to institutionalize the kind of care that he was providing to her and to others,” he said. “My wife’s belief was that one person could make a difference. One person can make a difference. Multiple people can make a difference. It’s all about advocacy and getting the message out. And it’s about all of us providing the support needed to overcome this class of diseases.”

The 2019 MPN Champion Awards will be held on September 21, 2019. For information, email canadianmpnnetwork@gmail.com

Articles

Features

The 2018 MPN Champion Awards celebrate Canadian patients, caregivers and supporters.

Moving MPNs Forward

CHRONIC LYMPHOCYTIC LEUKEMIA (CLL), the most common leukemia in adults, has been the focus of headlines in recent years because of enormous progress in its treatment.

Within the past six years or so, seven novel drugs have been approved by Health Canada to treat the condition. Four are monoclonal antibodies: Rituxan (rituximab), Campath (alemtuzumab), Gazyva (obinutuzumab) and Arzerra (ofatumumab). Three are small molecule inhibitors: Imbruvica (ibrutinib), Zydelig (idelalisib) and Venclexta (venetoclax). Treanda (bendamustine), a standard chemotherapy agent, was recently approved in combination with Rituxan.

These new treatments would be great news for both clinicians and patients, except that they are not equally accessible across the provinces. In fact, Canada's numerous health systems mean that what patients have access to is often determined by their postal code.

Still, as CLL care continues to change, so does the outlook for those living with it.

CLL originates in the bone marrow, where blood cells form. The B lymphocytes, a mature type of white blood cell, start to grow and survive beyond their normal life span. These leukemia cells may look somewhat normal under a microscope, but they reproduce too rapidly, survive longer than normal cells and crowd out other blood cells — mainly the red cells, which are involved in oxygen delivery, and platelets, cell fragments that help with blood clotting. In severe cases, the number of neutrophils, white blood cells that are part of the immune system, may be affected.

The cancer cells receive growth and survival signals from both the bone marrow and the lymph nodes, which causes them to circulate through the blood system on a regular basis. As a result, patients may have no symptoms at diagnosis except for an abnormal lymphocyte count.

Each year, about 2,500 people are diagnosed with CLL in Canada, and about 600 people die from it.

At diagnosis, most people with CLL are not aware of having any symptoms, says Versha Banerji, MD, FRCPC, a hematologist in the CLL Clinic at the University of Manitoba and CancerCare Manitoba. “Very often, the primary physician will see an elevated white blood cell count during a routine blood test,” she says. “Sometimes patients may have fevers, chills and noticeable weight loss, but this is mostly in advanced stages of the disease.”

These symptoms — in addition to fatigue, changes in appetite and sleep, bleeding or bruising easily, and/or enlargement of the spleen, liver or lymph nodes &mdash; call for a visit to a doctor.

CLL can be diagnosed by a simple blood test. “If a person comes in with a high white cell count, we basically use flow cytometry (a type of electronic cell analysis) to look for CLL cells,” says Banerji, who sees about 1,000 patients every year. “If the result is positive, the patient is sent to the CLL clinic for a treatment plan discussion.”

There are two staging systems that doctors use to predict disease progression: the Rai Staging System and the Binet Staging system. Banerji uses the Rai system, which classifies CLL into five stages ranging from low-risk to varying degrees of high-risk, which are associated with the presence of enlarged lymph nodes and/or spleen, elevated lymphocyte counts, a low platelet count and/or low levels of hemoglobin, a protein whose job is to transport oxygen within the body.

“Determining the right treatment plan for CLL is more complicated than it has ever been,” Banerji says.

Initial standard treatments can range from watchful waiting to chemotherapy for intermediate- or high-risk CLL.

Targeted therapies are used after chemotherapy if the cancer is no longer responding or has recurred. Stem cell transplants are still available, but are no longer considered part of routine care. Banerji considers three factors in determining treatment: age, fitness and molecular markers.

Age is broken down into two categories: 66 years and above and 65 years and below. Fitness is scored using the CIRS illness rating scale to predict a patient’s ability to tolerate certain treatments, with 6 or below being considered fit and 6 or above deemed unfit. This grading is subjective but has been used heavily in clinical trials for CLL. Identifying molecular markers, such as genetic mutations that are treatable with drugs, is also very important.

“Molecular markers can help us determine which patients can live for long periods without treatment, and those who will have progressive disease,” she says. “The ability to identify these markers has really changed the CLL experience for many people.”

One example is a test that looks for a mutation in the IgVH gene.

“We know that people with IgVH mutations tend to have better outcomes than those with unmutated IgVH,” she says. “But we need the test to tell us, and in Manitoba, for example, we don’t have access to it.”

Unfortunately, not every patient with CLL has access to these tests.

“Canada is fragmented when it comes to testing capabilities,” says Banerji. “It is frustrating as a clinician and for patients who may not be getting treatment that is as appropriate and targeted as it could be.”

As in several other provinces, unless there is a compassionate program offered by a manufacturer or the patient has private insurance, the only options left are to pay out of pocket, which can be quite burdensome, or to opt out.

This has prompted Banerji to take on the role of advocate in addition to her busy role as a clinician and senior scientist. Together with her clinical team, she is working with the provincial diagnostic labs and CancerCare Manitoba to make treatment-guiding tests like the one for IgVH available in Manitoba.

Even without more universal access to such tests, the outlook for patients with CLL has improved greatly. “We have so many more options in CLL now than we did even 10 years ago, and it has changed everything,” Banerji says. “Early discussions with patients used to be desperate. Now we are more hopeful. Before, we would tell a patient that chemotherapy or a transplant was the treatment, and we would deal with side effects as we went along. Now, we have choices.”

Patients are also playing a more active role in their own health.

“Patients are engaged more than ever,” she says. “We not only talk about prognosis, but also about what they want out of their life and what their goals are for the future.”

Despite all the good news in CLL, a cancer diagnosis is still scary for most. Connecting with a community that is familiar with the journey can be critical not only to better understanding the disease, but to moving forward through treatment.

One of these communities is the Canadian CLL Patient Advocacy Group, which can be reached at cllpag.ca. Other resources include the Leukemia & Lymphoma Society of Canada, Lymphoma Canada and Lymphoma Coalition.

“CLL can be a challenging diagnosis,” says Deborah Baker, past chair of the CLL Patient Advocacy Group’s Board of Directors. “One way that patients and caregivers can feel more in control is by accessing a community of people who share their experiences. These people are valuable sources of education, advice and support, and in the end, these connections can greatly improve outcomes.”

This article is part of the Bringing the CLL Community Together program. Funding is provided by an unrestricted educational grant from Pharmacyclics, an AbbVie Company, and Janssen Biotech, Inc.

Living With CLL

Patients with CLL can benefit from improved treatment options, but some are waiting for equal opportunity to testing and drugs.

Advances and Access

WHEN WE STARTED TALKING about the idea of a magazine focused on cancer for Canadians more than a year ago, we had a vision.

As a patient and a caregiver, we had been living lives forever changed by blood cancer. We knew well the suffocating fear of a cancer diagnosis, the feelings of uncertainty that make it difficult to plan a future, and the devastating emotional impact that is felt long after that first visit to the cancer clinic. We had also been leading successful non-profit organizations, the Canadian MPN Network and the Canadian CML Network, each supporting a rare blood cancer and committed to ensuring that patients and families had what they needed to live well despite their disease.

Our own lived experience and work with patients and families have taught us three critical things: first, understanding your disease can mean the difference between living your best life and merely surviving; second, sharing authentic stories gives you power; and finally, people who understand your experience and can simply nod and say “I get it” hold the key to moving forward. We wanted to create a magazine that did all these things: educate, tell inspiring stories and help those whose lives have been changed by cancer find their community so that their future can look brighter.

®, the largest cancer-focused consumer publication in the United States. An indispensable guide to every stage of the cancer experience, CURE Media Group has built a solid reputation for quality cancer information delivered with the patient in mind, covering everything from leading research and treatment news to mental and emotional wellness and advocacy issues. It also has been vital to giving patients and caregivers a voice. This successful combination of science and humanity has been empowering and inspiring people with cancer for more than 15 years. It’s an amazing accomplishment that we wanted Canadians to be a part of.

So here we are launching the first issue of 

® designated specifically for Canadian patients, caregivers, advocates and healthcare professionals. This issue is a sneak peek into all that we have planned in the coming editions: articles featuring some of Canada’s best and brightest clinicians and researchers, lifestyle and wellness information to make the cancer experience a little bit easier and patient and caregiver voices sharing their important stories. We will also cover issues that are uniquely Canadian, such as the current pharmacare debate and the challenges of living in a fragmented system where your postal code often determines the quality of your health-care. And although this issue focuses on blood cancers, 

®’s Canadian edition is about exploring the news, impact and challenges of all cancers, so stay tuned.

We are also passionate about advocacy and supporting the many Canadian groups that have made it their mission to improve life with cancer through treatment access, research funding, promoting supportive care and other initiatives. Their work is what drives our many health-care systems to be better. Hear these perspectives in the coming issues.

Of course, none of this would be possible without the expertise of CURE®’s solid editorial and design teams. We are so grateful, proud and excited to be a part of such a dynamic force in cancer care improvement and education.

We’d love to hear what you think. Have a story to share? Do it! You can reach us at editor_canada@curetoday.com.

 Lisa Machado, Content Editor, Canada and Cheryl Petruk, Director, Business Development, Canada

Editor

WHEN WE STARTED TALKING about the idea of a magazine focused on cancer for Canadians more than a year ago, we had a vision.
 

Inaugural CURE, Canadian Edition Editor's Note: Hello, Canada!

ASK MY FIANCÉ, MARVIN, how he got through the days when there was a possibility that I wouldn’t survive cancer and he’ll say it was a careful combination of faith, positivity, being involved in my care and the love of our sweet girls. “Getting away from the hospital to spend time with Isabelle and Victoria was a lifeline for me,” he says. “They helped me recharge and be strong for Michelle.”

I also found strength in our girls, who were five years old at the time. But for me, it came in the form of fierce determination as I focused on how much they needed me and on the things we had planned to do, like go on a Disney cruise. When I found out how close I had come to dying, I was terrified, but I knew I wasn’t done here yet.

I was nine days away from my 37th birthday when I was diagnosed with acute promyelocytic leukemia (APL), a subtype of acute myelogenous leukemia, and one of the rarest forms of the disease.

I hadn’t been feeling well for three weeks. I was having headaches, bruising easily, developing cold sores that wouldn’t heal and I was so tired. In retrospect, I should have known that something was wrong, but as a busy mom and career woman, I didn’t have time to be sick. So I kept going. It was a very heavy menstrual period that sent me to the emergency room.

I knew I was in trouble when the doctor asked how old my kids were. “It’s never easy to tell anyone this,” she said. “You have leukemia.” My first thought was, I’m going to die.

The Juravinski Hospital in Hamilton, Ont., is where I met Dr. Brian Leber, the man who would save my life. He said that APL was the most curable form of leukemia and the prognosis was a 90 per cent full recovery, but I had to make it through the first 10 days of treatment. He also said that had I not gone to the hospital when I did, I would likely have had an internal bleed that would have killed me within 24 hours.

I spent 22 days in hospital, and in mid-January 2018, I finished the first phase of treatment. By the end of the month, I was in remission and the cancer was undetectable. I am now working on maintaining remission.

I have learned a lot through all of this, but one thing is for sure: When I am on my actual deathbed, I know that what will matter most is the time Marvin and I spent together, living life, having fun, appreciating our family and watching our kids grow. That’s what I want to remember on my dying day.

MICHELLE BURLEIGH lives in Georgetown, Ontario, with her fiancé, Marvin, and two beautiful daughters. Since being diagnosed with APL, her life purpose is now. She shares her experiences through her blog, So You’ve Got Acute Blood Cancer…Join The Club!

Voices

An acute promyelocytic leukemia survivor reflects on fear, courage and the future.

Finding Strength in Family

TWENTY-FIVE YEARS AGO, when Jeff Lipton, PhD, MD, FRCPC, sat down to talk with a patient about their blood cancer diagnosis, there wasn’t much to say. With few options outside of chemotherapy and stem cell transplants, many patients faced gruelling treatments with little reassurance of a good outcome. Today, because of improved diagnostic tools and innovative medicines, many people with blood cancer now have therapy choices that are rewriting their future.

Lipton, who specializes in chronic myeloid leukemia (CML) and stem cell transplantation at the Princess Margaret Cancer Centre in Toronto, sat down with 

® to discuss the current blood cancer landscape in Canada.

®: What is one of the most exciting developments in blood cancer in the past 20 years?

The work that has been done in CML has been really interesting. Not too long ago, most patients with CML faced a transplant to survive. We lost many people back then. The development of a tyrosine kinase inhibitor called Gleevec (imatinib) changed all of that. We were able to start telling patients (with the disease) that they could expect to live close to a normal life expectancy. I often tell my patients that CML is not going to be what kills them.

Also in CML, we have found that some patients who meet certain criteria can stop their medication safely. Treatmentfree remission is now part of the initial conversation that I have with newly diagnosed patients. So instead of telling them that they will be taking a daily medication for the rest of their lives, I now tell them that there is a possibility that they can stop their drug in the future.

Where do developments stand in other blood cancers?

The discussions with patients are becoming much more positive in many blood cancers. Diagnostic tools for molecular mutations are potentially changing the outlooks for the better in diseases like acute myeloid leukemia, myelodysplastic syndromes and myeloproliferative disorders. However, the downside is that these tools are not available as standard in every province. In acute lymphoblastic leukemia, we are finding that the treatment used for children is actually effective until 30 or 35 years old, not 18 years old as we once thought, and some new therapies are salvaging patients who were once thought doomed. Targeted and rationally designed chemotherapy has made a huge difference in survival for people with chronic lymphocytic leukemia and myeloma.

If you could change one thing about being a researcher in today’s blood cancer space, what would you change?

If I had one wish, I would want to see Canada on par with the United States. First, it would be great if Health Canada approved therapies at the same time as the U.S. Food and Drug Administration did and we could move forward together. In terms of research, Canada is considered small and because of this we are perceived as not having much of an impact. But what is often overlooked is that although Canada measures about 10 per cent of the U.S. population, we often supply 20 per cent or more of the patients when we participate in these studies. That’s really important. We are participating but, unfortunately, we are not initiating as often as we could be.

So size makes a difference when it comes to getting the dollars needed for research?

From the perspective of the pharmaceutical industry that funds research and seeks approval for the use of new drugs, the list of eligible trial sites often starts with the U.S., Europe and then Japan. There is testing happening in the U.S. that (Canada) can’t even think about getting started here. It’s frustrating to not be a part of these developments, both as a clinician and for patients.

Predict what the Canadian blood cancer landscape will look like in 25 years.

The most exciting thing that is happening now is we are gaining a solid understanding of biology and if you understand biology, you can pick your target. I also expect that treatments will be very expensive. Take colon cancer, for example, which has a lot of mutations. Imagine trying to target all of these mutations. Or chimeric antigen receptor therapy, more commonly called CAR-T cell therapy. You could be looking at treatments that cost so much that given the number of potential patients, effective treatments could be out of reach for the average person if the public system cannot afford them.

Jeff Lipton, PhD, MD, FRCPC, is a medical oncologist at the Princess Margaret Cancer Centre in Toronto. He is also the recipient of the 2018 Brian Druker Award for Extraordinary Care in CML.

Speaking Out

Toronto’s Jeff Lipton, PhD, MD, FRCPC, shares his thoughts on the outlook for blood cancers.

A Brighter Future for Blood Cancers

IT WAS ABOUT FIVE years ago that Gerard Farrell, MD, a general practitioner (GP) in oncology, noticed a new trend in treating patients with cancer. With the introduction of biologics and other innovative therapies, people were not only living longer, they were being discharged from care sooner.

“The number of people that we were seeing grew so much that the usual five-year discharge plan became discharge on completion of treatment,” says Farrell, an associate professor at Memorial University in Newfoundland.

“Appointments that used to focus solely on diagnostics started to shift to intense discussions about managing life after cancer. We just couldn’t manage the workload.”

What happened next would push Farrell to begin one of the only GP-run after-care clinics for cancer survivors and those living with chronic cancer in Canada that exists outside of a cancer centre.

“A cancer diagnosis is tough, but living in the ‘after’ can be tougher,” he says. “What does it mean for work, for family relationships, for the future? These are the questions that people need to work through in order to move forward.”

As survivors who were no longer being seen in a cancer centre struggled to find peace in their after-cancer lives, they sought solace from their family doctors, who often didn’t have the time or the expertise to handle their complex physical and emotional issues.

“Family doctors were getting very specific cancer-related questions like how to manage hot flashes induced by (the hormonal drug) tamoxifen,” he says, “but they were also being asked to help patients work through the emotional fallout that happens after cancer.”

Farrell began to worry that patients might slip through the cracks as they faced both physical and huge emotional hurdles to rebuild their post-cancer lives.

Issues like anxiety about recurrence, depression around the physical changes brought on by treatment and questions about how to maintain relationships were deeply affecting the well-being of patients and preventing them from enjoying their cancer-free lives.

“I became very interested,” Farrell says, “in the concept of survival: not just biologic survival, which is important, of course, but how does one survive cancer emotionally, mentally and spiritually?”

The After Care Clinic began in September 2014. Farrell had the needs of his patients in mind, right down to choosing a location. Housed in the Family Medicine Clinic at Memorial University, the facility looks just like any other family practice, a decision made very much on purpose. It’s staffed solely by Farrell, although he hopes to add to his team, either on site or through cooperative agreements with professionals in other locations who would provide care tailored to the needs of this population.

“Everyone experiences cancer differently, but for many, the recurring images of the disease — bald heads and IV poles &mdash; that you see at an oncology centre are enough to bring on the old feelings of fear and uncertainty,” he says. “I didn’t want that. I wanted these people to see babies, elderly people and families. I wanted them to see life and the importance of moving on.”

With a patient load of about 300 and growing, Farrell is bursting with success stories. He talks about a young woman he saw after she was discharged from her oncologist’s care. She was consumed with anger about what cancer had done to her life. Someone who had taken pride in being in control, she now felt powerless and unable to focus on anything other than what cancer had taken away from her.

“She would come in every three weeks and say things like, ‘I feel this way because I have cancer,’ even though she had been declared cancer-free,” he says. “We spent a lot of time working through her emotions, exploring the feelings of powerlessness and the ways she could bring a sense of control back into her life. The first time she said, ‘I had cancer,’ and put it in the past, was a big victory for her and for me.”

Many patients also live with the constant fear that, if their bodies betrayed them once, it can happen again; as a result, they become hyper-vigilant about their health.

“So, you come in with a pain in your toe and you’re worried it could be your cancer coming back,” says Farrell. “Well, I’m not laughing. I am also not telling you to stop worrying and saying that you are lucky to be alive. I am looking at that toe and talking about why or why not we should be concerned.”

While worrying about toe pain as a sign of cancer may sound crazy, to many survivors and those living with cancer, it’s not far-fetched. In fact, once you get a cancer diagnosis, anything feels possible. And in some ways, it is. “Uncertainty is big,” says Farrell. “The truth is, once you have had cancer, you are never off the hook. Everyone has heard the stories of the person who was cured, only to die a few months later of another cancer. It happens. The question is how to live despite these stories.”

The answer may lie in creating a safe space like Farrell’s clinic, where fears are welcome, even the seemingly irrational ones. He also sees his clinic as a periodic landing place for survivors and chronic patients no matter how long it has been since their cancer experience.

“The fears and concerns don’t always come right away,” he says. “Sometimes it’s after treatment is long done and the people have settled back into their lives years later that they begin to feel the sense of loss and fear.”

He tells a story of a man diagnosed with bladder cancer. He had been stoic throughout his treatment, taking the experience one day at a time and focusing on getting through it.

When Farrell saw him and his wife years after he was declared cancer-free, he was shocked to hear the man recall very early discussions with his surgeon and oncologist — specific details about the stage of his illness and the prognosis.

“His wife just stared at him, speechless,” says Farrell. “These were things that he had never told anyone, things he had been carrying with him and worrying about for years. People need a place that they share this stuff and hear that it’s OK to feel this way.”

Farrell hopes that his cancer after-care concept catches on in the rest of Canada. In fact, he is working closely with other GPs, non-profit groups and non-governmental organizations to explore ways to expand to other provinces.

“You know how diabetes became a ‘thing’? And HIV? We have multidisciplinary programs in place to help these patients,” he says. “So why not post-cancer care? I think it’s a ‘thing.’ A really big ‘thing.’”

Survivorship

A clinic in Newfoundland offers survivors help to move forward.

Changing With the Times

WHEN LINDSAY THOMPSON WAS diagnosed with chronic myelomonocytic leukemia in August 2007, her doctor decided to “watch and wait.” But by Christmas, she was told that the disease had transformed into acute myeloid leukemia and that the best chance for survival was a stem cell transplant (SCT).

“The options were either having a transplant or crossing the days off on the calendar that I had left to live,” says Thompson, who lives in Calgary, Alberta. “But I had kids and I wasn’t ready to give up.”

In March 2008, she received an allogeneic transplant, a process that involves collecting stem cells from a matched donor. Thompson’s match was a man in the United States. Today, she continues to struggle with fatigue and severe graft-versus-hostdisease (GVHD), a potentially serious complication of allogeneic SCTs, in her lungs.

“I knew soon after the transplant that I would never work again,” says Thompson, who was a nurse clinician in pediatric infectious disease. “So when I met my donor, the person who saved my life, I wanted to pay his gift forward by helping others.”

Thompson began working with the Leukemia & Lymphoma Society of Canada in the First Connection program, which connects newly diagnosed patients and their families with a trained volunteer who has had a similar disease experience. Taking about three to five calls a year from people facing a transplant, Thompson wanted to do more. She joined the Canadian Blood and Marrow Transplant Group (CBMTG) to share her experience as a patient.

Founded 25 years ago by the late transplant pioneer Hans Messner, CBMTG began as a professional entity made up of transplant experts from across Canada. With a mandate of education, research and outreach, the group’s mission was to advance transplantation in the country. Now with the professional network intact, the group has set its sights on building a much-needed transplant patient and caregiver community.

“One of the greatest things you can do for someone is to understand their anxieties and concerns,” says Thompson, who cochairs the CBMT patient group. “They need to see that their feelings are legitimate. This is how people move on.”

Kirk Schultz, MD, FCAHS, director of the Michael Cuccione Childhood Cancer Research Program at the British Columbia Children’s Hospital and CBMTG’s director-at-large of research, agrees. He tells a story of when he was invited to speak with patients who had received an SCT in an education session on GVHD. He was both moved and inspired by the stories that were being told of how their struggles did not end after the transplant.

The unique challenges of a transplant make education and support critical to a good outcome, says Schultz. Survival can be bittersweet as patients experience the relief of being free of disease while scrambling to adjust to what is often a lifetime of lingering difficulties.

“There can be long-term health, emotional and financial issues after a transplant,” he says. “What’s worse is that there are inadequate resources available to provide support. This is a very underserved community.”

Schultz, along with other members of the CBMTG board of directors, has already taken steps to create a safe place for people facing a transplant or living in the “after” of a transplant. Facilitated by David Jones, MD, FRCPC, a hematologist from St. John’s, N.L., CBMTG will host a patient-led patient and caregiver symposium at its annual conference in June 2019.

Schultz envisions the patient and caregiver group offering peer-to-peer support and networking, with advocacy coming soon after.

“There are things that I want to start a conversation about, like the fact that governments don’t recognize the need for support for transplant survivors even though many adults can’t go back to work because of severe GVHD,” he says.

Dave Mercer had been a technology consultant for 30 years when he was diagnosed with chronic myelogenous leukemia (CML) in 2010. When drug therapy lost effectiveness, he had an unrelated SCT in 2012.

“Some days, the GVHD seems worse than the leukemia,” he says, describing skin, bowel, liver, eye, ear and mouth issues, including a loss of sense of smell and taste. “I spent so long looking for answers that I never got. I felt so alone.”

The turning point came while attending a patient and caregiver meeting held by the Canadian CML Network in Toronto.

“Talking to others who were experiencing the same challenges and how to manage them took the loneliness away,” he says.

Mercer, who marked the fifth anniversary of his transplant last year by marrying his girlfriend, Sue Martin, is now working with the CML Network and the CBMT patient group to make sure other transplant survivors don’t have to experience the same feelings of isolation.

“Finding a community was a real breakthrough for me,” he says. “Now I want to raise awareness about the challenges of transplants and let others know that there are resources out there to help. There is still so much to be done.” Thompson is up to the challenge. She shares some of the advice she gives to patients who are feeling overwhelmed. “You know that saying, you can’t see the forest for the trees?” she says. “Forget the forest. You have to take one tree at a time.”

Advocacy

The Canadian Blood and Marrow Transplant patient group uses community to improve the lives of transplant survivors.

Hematology | CURE, Canadian Edition