The Blood Cancer Experience

"I'm an example of what can be done for someone with multiple myeloma," says David Johnson, of B.C., first diagnosed with the disease in 2012 in his early 50s. Having had 2 relapses, 2 stem cell transplants, and participated in a clinical trial for CAR T-cell therapy, David is in remission today. He helps others in the blood cancer community by volunteering for couple of programs at The Leukemia & Lymphoma Society of Canada. Also in this podcast, Dr. Anthony Reiman, a medical oncologist at St. John Regional Hospital in New Brunswick, talks about advances in recent years in treatment for and longevity of people with multiple myeloma. For more information about this form of blood cancer, please visit:https://www.bloodcancers.ca/i-have-blood-cancer/myeloma/multiple-myeloma

Graft vs Host Disease, known as GvHD, is a side effect of a life-saving procedure. People who undergo an allogeneic stem cell transplant - where a donor's stem cells are transplanted into the recipient - can experience either acute or chronic GvHD. Listen to blood cancer survivor Libby Goszer who shares her coping strategies for living with chronic GvHD, a condition she describes as "a continual rollercoaster ride that has both expected and unexpected twists and turns." The B.C. resident has lived with cGvHD for 16 years; she's learned to enjoy the 'ride' of her life as a mom, wife, professional, and volunteer. Also in this episode, a Canadian hematologist-oncologist and a specialist in GvHD, Dr. Kirk Schultz talks about chronic as well as acute GvHD, symptoms, and advances in medical treatments. Read more about GvHD from The Leukemia & Lymphoma Society of Canada (LLSC) with these easy-to-understand, short factsheets: Understanding GvHD - https://www.bloodcancers.ca/sites/default/files/2024-10/lls1768-f-fs-gvhd-understand-e03.pdf Treating GvHD - https://www.bloodcancers.ca/sites/default/files/2024-10/lls1769-c-fs-gvhd-treating-e02.pdf If you have any questions about your blood cancer experience, or that of a loved one, please reach out for personalized support from a trained LLSC community worker in your region. Find their contact information at: https://www.bloodcancers.ca/i-have-blood-cancer/how-we-can-help/access-one-one-personalized-support You are not alone.

It may be the first time you've talked about your blood cancer, since your diagnosis, with anyone outside immediate family, or it may be after years of living with cancer... Either way, the LLSC community services lead in your region is ready to listen and support you in any way you need. Geoffrey Molle, one of those leads, talks about the confidential, safe space he creates for anyone impacted by a blood cancer, in this podcast episode. Access one-on-one personalized support with the community service lead in your region; details at: https://www.bloodcancers.ca/i-have-blood-cancer/how-we-can-help/access-one-one-personalized-support

It may be the first time you've talked about your blood cancer, since your diagnosis, with anyone outside immediate family, or it may be after years of living with cancer... Either way, the LLSC community services lead in your region is ready to listen and support you in any way you need. Geoffrey Molle, one of those leads, talks about the confidential, safe space he creates for anyone impacted by a blood cancer, in this podcast episode.

Tziona Lugasi, clinical psychologist in the hemato-oncology department at CHU Sainte-Justine, talks about the impact of cancer on children, teens and their parents, and the transition from pediatric care to adult health care.

Maura C. had recently returned to work after maternity leave when her daughter, then 15 months old, was diagnosed with acute myeloid leukemia (AML) and immediately admitted to the oncology ward. “This is a nightmare I'm not waking up from,” Maura thought over the 5 months her toddler was in the hospital. She says she and her husband moved from their initial “fight-or-flight” mode, to chronic anxiety – both over the treatment period and afterwards when “we felt anxiety about the cancer coming back.”  Maura acknowledges that support for mental health was important for her. "Our family doctor was an ally and a resource,” she says, “and I had an "amazing therapist" to deal with marriage strain challenges as well, and support from close friends and her parents.  Are you a parent of a child with blood cancer? Find resources and support here: https://www.bloodcancers.ca/i-care-someone-blood-cancer/blood-cancers-kids-teens-young-adults/childhood-blood-cancers#for-parents-and-caregivers

The emotional cost of caregiving when a loved one has a blood cancer is no small matter – as Saskatchewan's Lori Galbraith can attest. The mother of four was the caregiver of her husband Jim, who was diagnosed with acute myeloid leukemia (AML) and underwent a stem cell transplant. “The hardest part was providing positive emotional support [to my husband] when I was worried and wondering if I'd ever get back the husband I had prior to AML... I'm trying to support him through it all – but what do I do with my thoughts?” Lori says in this podcast. Are you caring for someone with a blood cancer? The Leukemia and Lymphoma Society of Canada has support, services, and resources for caregivers, including a peer-to-peer support program. Visit:⁠ https://www.bloodcancers.ca/i-care-someone-blood-cancer⁠

The term, “palliative approach to care” refers to a person-centered, holistic approach including emotional, spiritual, social and psychological care, offered by a larger team of healthcare professionals (beyond doctors and nurses) and introduced earlier in a cancer experience for full integration into an individual's care plan. Valerie Fiset, director of the Champlain Hospice Palliative Care Program at the St-Vincent Hospital in Ottawa hopes individuals and their families shift their perspective on palliative care "from being afraid they're coming to the end of life, and start to feel that palliative care is going to support their well-being and quality of life."

Researchers are focused on maintaining an excellent cure rate in diffuse large B-cell lymphoma (DLBCL) and minimizing some of the treatment individuals receive – reduce the number of cycles of chemotherapy or avoid radiation, and looking at new drugs to improve the cure rate for others with DLBCL. Join us as we chat with Dr. John Kuruvilla, working as a hematologist-oncologist for 20 years (currently at the Princess Margaret Cancer Centre in Toronto) including as a researcher in DLBCL, which is the largest form on non-Hodgkin lymphoma. Learn more about DLBCL at:  https://www.bloodcancers.ca/diffuse-large-b-cell-lymphoma-dlbcl 

Dr. Rena Buckstein from Odette Cancer Centre in Toronto shares the basics of myelodysplastic syndromes (MDS) diagnosis, treatment, and side effects.

Mayra Husic shares her experience with Follicular Lymphoma.

Dr. Philip Kuruvilla talks to us about current chronic lymphocytic leukemia (CLL) treatment options, potential side effects and how to manage them.

Dr. Tobias Berg, an Associate Professor and Researcher from McMaster University explains Maintenance Therapy as a treatment option for AML and the factors that influence the decision to start this type of treatment.

What started as a normal trip to the cottage ended up leading Tom to take a trip to the hospital- where he was diagnosed with myelodysplastic syndrome. Tom shares his blood cancer experience and how learning about his diagnosis, staying positive, and staying active are what helped him through the difficult times of treatment.

Rachel Sutherland is an Indigenous Patient Navigator at the London Regional Cancer Program and Dr. Samantha Boshart is a Family Physician who is also the Regional Indigenous Cancer Lead for the Southwest Regional Cancer Program. In this podcast, both experts discuss the unique challenges experienced by the Indigenous Community in Cancer Care and the efforts that our hospitals are taking to ensure that they receive equitable care in their cancer experience.  

Alyssa Brandone was 11 years old when she was diagnosed with Acute Myeloid Leukemia. In this podcast episode, Alyssa shares her experience with a pediatric blood cancer and how the support of her family and friends helped her overcome the challenges of integrating back into “normal” life after treatment.  

In this episode of our AYA podcast series, Sukant Sharma shares his experience balancing work, side effects, and his personal life after being diagnosed with Acute Lymphoblastic Leukemia.

After being diagnosed with leukemia at 21 years old, Shae-Lynn Way shares her experience with shifting her mindset while preparing for a second stem cell transplant after her leukemia returned.

Originally thought to be a locked muscle from exercise, Michelle Burleigh shockingly discovered that she had a rare form of Acute Leukemia. In this podcast, Michelle recounts her experience being diagnosed with APL, revealing how her sudden diagnosis taught her about finding perspective, slowing down, and making the most of each day despite living with uncertainty.

A love life can be positively or negatively affected if one of the partners is diagnosed with cancer. Meeting a new partner following the disease could also cause several concerns. How to discuss changes in the relationship with your partner? How to deal with possible sexuality and fertility problems? Should someone tell a new date that they had cancer? If so how and when?

Being affected by cancer at the beginning of the adult life often forces to put various projects on hold. The impacts of the disease are numerous, and they sometimes affect the identity of the person. Once the remission is pronounced, how is it possible to go back to a normal life?

Jacqueline Galica an oncology-certified Registered Nurse with over 20 years of experience in oncology. She is currently an Assistant Professor at the Queen's University School of Nursing, where her research program focuses on the psychosocial concerns – including fears of cancer recurrence - of post-treatment cancer survivors.

It was a surgery for a rare congenital heart defect that lead Grace's doctors to shockingly discovered her stage II Hodgkin's Lymphoma. In this episode of the AYA podcast series, Montana and Grace discuss the realities of isolation and survivor's guilt that come with achieving remission after a blood cancer diagnosis as a young adult.

Join Charlotte Hall-Coates and Natasha Sani as they discuss the role of a Community Services Lead in providing personalized support to those in the blood cancer community. In this podcast, Charlotte and Natasha highlight the individualized support available to you through the Community Services Lead in your region and how they can help you through each step of your blood cancer experience.

It was an ordinary bump on the elbow that wouldn't heal that led Lindsay Thompson to her doctor. The eventual diagnosis of chronic myelomonocytic leukemia (CMML) came as a complete surprise. Lindsay shares how she found strength in support from her family and coworkers to help her through her diagnosis and treatment.

In this podcast you'll meet two members of the McMaster SynBio team, a student-led research team that hopes their research will improve treatments for B-cell lymphoma. The team is working on a method that they hope will ultimately kill the cells responsible for B-cell lymphoma while leaving healthy cells intact. The team gathers passionate undergraduate students from across scientific disciplines to participate synthetic biology projects. What is synthetic biology? It is the engineering and redesign of biological systems that do not already exist in nature.

When Al Pritchard learned that he had anaplastic large cell lymphoma (ALCL), he told himself that cancer was not going to take anything from him. Taking control meant not only sharing his diagnosis with family and friends, but also with his work community. The support he received showed him that he was not alone and this is something he would say to anyone that is newly diagnosed. "You are not alone. Reach out to organizations and ask for support even when you don't know what to ask for."

Karen Williamson was feeling well and looking forward to a trip to Europe so it was a shock when she was diagnosed with leukemia. She spent many months in the hospital being treated for the disease. Early on her medical team told her she would need a stem cell transplant. Karen says she was the process went relatively smoothly. However, she admits that reading about what was going to happen did not do her any good. "What I needed to do was take it one day at a time and trust my medical team." Stem cell transplant resource

When Ron Ternoway was diagnosed with a rare blood cancer called Waldenstrom macroglobulinemia (WM), he did what he has always done when faced with an unfamiliar topic. He tracked down as much information as he could so he could be a full partner is his treatment. "My way of freaking out when I got the big 'C' diagnosis was to learn as much as I could." Ron is also generous with his knowledge, sharing it through a local support group and as a First Connection volunteer. Ron continues to live with WM and in this episode, he shares how he has coped physically and mentally.

It's not at all surprising that when Eric Pitters was diagnosed with chronic lymphocytic leukemia (CLL) he told his doctor, "I've got a cancer and I want it treated now." However, his doctor explained that it would be best to use an approach called Watch & Wait. Several studies have shown that early treatment does not have benefits for low-risk blood cancers and does not lengthen your life. While he trusted his doctor's expertise, Eric admits that it was difficult to deal with knowing the cancer was not being immediately treated. Eric explains what watch & wait has meant for his cancer and how he has coped.

Brent Kirchner returned from an afternoon at the local pool not feeling well and thinking he was coming down with the flu. As his symptoms worsened, he ended up in the hospital and in an induced coma to help clear his lungs of fluid. Brent was eventually diagnosed with hairy cell leukemia, a type of cancer in which the bone marrow makes too many white blood cells. The excess cells are abnormal and look "hairy" under a microscope. Brent shares his challenging experience of living through hairy cell leukemia and says a very good healthcare team and a strong personal support network was crucial in helping him cope. LLSC hairy cell leukemia resources

In the last 10 years, there have been many advancements in the treatment of MPNs. In combination with a better overall understanding of its causes and what contributes to its progression, Dr. Dawn Maze says it is a very "exciting" time in the treatment of MPNs. In this episode, Dr. Maze, a hematologist at Toronto's Princess Margaret Cancer Centre, explains what MPNs are, how they are treated and the challenges those diagnosed with an MPN might face.

When she was a first-year resident, Dr. Mary-Margaret Keating's grandfather was diagnosed with a fast-growing lymphoma. At the time, she was unable to answer many questions from her family. It made her more interested in trying to understand the disease and was one of the factors that influenced her to specialize in treating lymphomas. Dr. Keating, a hematologist in Halifax, continues to be motivated by the treatment advancements which help those who are very sick get better. She also values the many long-term relationships she has formed with those affected by lymphoma and their families.

While her experience with an aggressive form of acute myeloid leukemia (AML) was filled with uncertainty - waiting for a diagnosis, not knowing the effects of chemotherapy, undergoing a stem cell transplant - Sarah Robertson says she learned some important lessons. She discovered she had an incredible supportive network of family and friends. She also says cancer forced her to slow down and focus on taking care of herself. LLSC AML resources

When Darren Bessette was re-diagnosed with diffuse large B-cell lymphoma (DLBCL) in 2019, it was more difficult to treat. Darren says he was fortunate to get access to a "revolutionary" new treatment through a clinical trial. Chimeric antigen receptor (CAR) T-cell therapy is a way to get immune cells called T cells to fight cancer by changing them in the lab so they can find and destroy cancer cells. In this episode, Darren shares his experience and how it led to his efforts to help others with a blood cancer.

When she was diagnosed with Philadelphia positive acute ALL (PH+ ALL) in 2007, Jeanette Castillo leaned heavily on her healthcare background to cope. Having seen many people go through their own health challenges with a hopeful perspective, she adopted a similar attitude. Now 14 years post-stem cell transplant, Jeanette admits is was a long a scary road, but she says, "It's okay to be afraid. You can't be brave or courageous without fear."

The lifting of many COVID restrictions across Canada may leave people living with a blood cancer feeling anxious and uncertain. However, Dr. Gerard Farrel, a GP from Newfoundland, says the best approach is to keep doing what you've been doing for the past 2 years for at least the next 2 months. In this episode, Dr. Farrel offers advice on what those living with a blood cancer can do to stay safe.

Ever since he was diagnosed with myelofibrosis 20 years ago, Doug Chisolm has tried to live every day to the fullest, even spending all his retirement savings and having to start saving again. In this episode, Doug speaks about the ups and downs of his blood cancer experience, why he thinks it's crucial to have a strong support system and what he shares as a First Connection peer volunteer.

Gail Whiteford returned from a 2014 hiking trip in Japan and Australia, visited her doctor for her annual physical, and was shocked to, soon after, be diagnosed with myelodysplastic syndrome (MDS). In this episode, Gail shares her treatment experience and some of the important lessons she has learned, maybe the most important one being, "I learned it is not weak to ask for help."

Andy Friedman returned to Ontario from BC's Gabriola Island with a plan to spend more time with his grandchildren. What he did not plan on was a chronic lymphocytic leukemia diagnosis. In this episode, Andy talks about the good and bad of his post-diagnosis life, including his experience with watch and wait. He also shares two important pieces of advice for others with a blood cancer: don't ever look at Google and lean on your social supports.

When Lois Lewis was diagnosed with AML in 2010, she had just retired from a career filled with music - as a music therapist, music teacher and leader of an intergenerational choir. Lois shares her cancer experience, which, not surprisingly, included the Gaelic version of the song Auld Lang Syne.

Just a few days before Christmas in 2010, Patrick Alexander, an LLSC First Connection volunteer from Vancouver, was diagnosed with Multiple Myeloma. He talks to us about his experience with his diagnosis, treatment and how it changed his view on life.

Dr. Ismail Sharif, an assistant professor at Dalhousie University and with the department of hematology, provides an overview of Myeloma: its causes, current treatment options and what the future holds for Myeloma treatments.

This podcast is for parents of children with blood cancer, as well as teenagers and young adults affected by this type of cancer. During and after cancer, physical activity is essential for young people. It can speed up their recovery, improve their overall health and help them cope with treatment side effects such as fatigue. In this podcast, Gabrielle Duhamel, kinesiologist and doctoral student in physical activity sciences, explains how physical activity can be safely integrated into daily life from the moment a person receives a diagnosis, as well as during and after treatments.

Joanne was diagnosed with Polycythemia vera in 2012. She shares her experience with her diagnosis, the support she received from local groups and how it has changed her life.

In this episode, Max Parrot, professional Canadian snowboarder, an Olympic silver medalist and an eight-time X Games champion, speaks candidly about his blood cancer experience and its impact on his life and career. Max explains why he felt like "a lion in a cage" throughout treatment, and lets listeners in on what it took to get his health and mindset back on track.

In this special AYA episode, Montana Skurka and NHL survivor Cynthia Ghosen discuss the power of positive thinking, staying optimistic, and how goal setting can help you through treatment. Cynthia also shares how family and friends played a key role in her recovery and how her cancer experience has shaped her current career.

In this special AYA episode, guest host Montana Skurka connects with Amanda Saunders, who 13 months after having a heart transplant was diagnosed with post-transplant lymphoproliferative disorder (PTLD). The two discuss what life is like living with a rare blood cancer while completing university and living through a pandemic.

In this special AYA episode, guest host Montana Skurka connects with Cole Myers. When Cole was 16 he went from competing in triathlons to being diagnosed with Hodgkin lymphoma. The two discuss diagnosis, relapse, and the silver-lining that come from their experiences.

In this special episode, guest host Montana Skurka connects with AML survivor Michael Wark. Together they explore topics of blogging and sharing a cancer experience, the importance of support networks, the power of spiritualty, and how his cancer experience has changed his life.

In this special episode, guest host Montana Skurka and NHL survivor Samantha Redsky discuss the all things relationships! They explore how a cancer experience can change the relationship you have with yourself, with your loved ones, and even with your own body.