| A new perspective on bone marrow transplant

Four months ago, Sabrina Leblond-Murphy didn’t know much about bone marrow transplants; most 27-year-olds don’t.

It was only after she was diagnosed with acute myloid luekemia (AML) in July that Quebec’s system for bone marrow donation became central to her fight for life. In her search for a donor, the stigmas and misconceptions associated with bone marrow donation have became clear to her, and she wants to dispel myths surrounding the process.

“I want people to know about it. I want to tell people that it is so incredibly simple,” she said.

Leblond-Murphy stressed that the act of registering to be a potential donor requires nothing more than giving a blood sample. It is no more complicated or invasive than blood donation or organ registry, yet bone marrow donations remain much less popular. While eight blood drives occur in Quebec every day, and people become organ donors by simply checking a box on the back of one’s driver’s license, there are no comparable donation drives for bone marrow stem-cell registration in Quebec.

Because members of Leblond-Murphy’s immediate family are not adequate matches for her transplant, she must seek a match through Hema-Quebec’s stem cell donation registry, a database that links with other registries across Canada and internationally, allowing patients access to 13-million possible donors.

Health professionals working with stem cell transplants said potential donors hesitate to get tested because the transplant procedure is misunderstood. Most, they said, are inspired to donate only when they know someone who needs a transplant.

“It’s the word – transplant. In itself, it is kind of a scary word,” Leblond-Murphy said. “It is usually associated, I think, with organ donations, with going in and doing surgery, with general aesthetics, weeks-long recovery. This is so far from what [a marrow donation] is. It is so much more minor.” But down the line, bone marrow donors do offer more of a commitment than do those who donate blood.

“I can understand why there is more publicity [for blood donations]. They are used so much more often and in so many more contexts, but people are aware of organ donations, too…. It’s probably a question of funding. I think that Hema-Quebec, or any other organization that does this, probably focuses more energy on more immediate problems. They want to have lots of blood donated because it is needed more urgently across the board,” Leblond-Murphy said.

“Blood transfusions have saved my life – on different scale,” she added.

Indications of a problem began with pain in her lower back, Leblond-Murphy said. She thought that it was only an athletic injury, and many doctors confirmed this early self-diagnosis, but the pain escalated with curious rapidity, and when Sabrina sought consultation at the Jewish General Hospital on July 8, doctors diagnosed her with AML, the most common form of myloid leukemia in adults.

Without a transplant, Leblond-Murphy has a 15 to 25 per cent chance of survival.

Siblings are usually the best matches because genetic and racial similarities provide the best basis for a successful transplant. Matching donors to transplant candidates is so sensitive that doctors and Hema-Quebec only test siblings for individual cases, explained Nancy Hutchison, a registered nurse working in Royal Victoria Hospital’s hematology centre.

“Even if you are a second cousin, the chance of you being a match is usually just as good as someone who lives down the street is,” Hutchison said.

Testing for individual patients only occurs in cases that require very specific racial matches. Because of their rarity, donors of a racial minority are in highest demand; organizations in the U.S. campaign actively for more.

Hereditary or acquired disorders, such as leukemia, cause abnormal blood cell production. A transplant of healthy bone marrow may correct these problems, restoring production of white blood cells, red blood cells, and platelets.

Donors receive an injection that increases the production of stem cells in bone marrow, so they can be collected via the bloodstream.

But, as Hutchison pointed out, not all bone marrow transplants are successful.

“Often times it is the complete opposite. It has hard extremes and there is no guarantee that it will be a cure or that it will be easy for patients. But sometimes the likelihood is good and it is the only option,” Hutchison said.

The population of the registry is older – a problem because donations from young adults are most desirable. Hema-Quebec’s recruiting efforts have mostly turned to targeting young adults because transplants using young stem cells are less risky.

“The transplant is essentially giving your immune system to a patient,” Hutchison said. “The more exposure it has had to different things, the more likely there will be some complication within patient, and the older you are, there is a greater likelihood that you have been exposed to infectious diseases could be transmitted to the patient.”

Every year, doctors recommend between 85 and 100 Quebec patients for bone marrow transplants, though many of them are never completed. According to Diane Roy, director of Hema-Quebec’s stem cell donor registry, only 70 to 80 per cent of patients find donors.

Roy said that the 2,500 donors Hema-Quebec receives yearly sufficiently serves the medical need for stem cells, adding that any more volunteers would strain the organization’s testing and registration resources.

But the international registry benefits from a high number of donors, and will need more donors in the future.

“We’ll need more [donors] down the road because as family sizes shrink, it is less likely that someone will find a match with siblings, and they’ll have to go to unrelated transplant,” Hutchison said.

Hema-Quebec still does not hold marrow drives at universities and colleges despite the desirability of young stem cells. Roy said that even in the absence of drives, bone marrow donations are adequately publicized. He maintained that nurses at blood donation clinics on university campuses inform donors about bone marrow transplants.

Leblond-Murphy said that immediate accessibility is key to increasing donation rates.

“People are much more likely to register when they’re directly handed a form and can automatically make a choice,” she said.

The perfect match

Leblond-Murphy now has several leads on potential donors. Doctors have told her that she can expect to receive either a bone marrow or core blood transplant within a few months. But she remains committed to making the registry more accessible and attracting new donors.

“For me this is the difference between achieving a full cure or not. My statistics [for recovery] increase dramatically with a bone marrow transplant, and it’s sort of cliché, but for me, it’s difference between life and death,” Leblond-Murphy said

“It’s important to do it soon. Someone can join the registry tomorrow and be a more compatible match for me or someone else, and we want that. We’re looking for highest match,” Leblond Muphy said.

In the meantime Leblond-Murphy is working freelance and undergoing periodic chemotherapy sessions to keep her leukemia in remission.

“I’m not preoccupied by it daily,” she said. “Maybe I should be. It’s definitely present, but it doesn’t stop me from living normally.”

Siblings are usually the best matches because genetic and racial similarities provide the best basis for a successful transplant. Matching donors to transplant candidates is so sensitive that doctors and Hema-Quebec only test siblings for individual cases, explained Nancy Hutchison, a registered nurse working in the hematology centre at Royal Victoria Hospital.

“Even if you are a second cousin, the chance of you being a match is usually just as good as someone who lives down the street,” Hutchison said.

Testing for individual patients only occurs in cases that require very specific racial matches. Because of their rarity, donors of a racial minority are in highest demand; organizations in the U.S. campaign actively for more.

Hereditary or acquired disorders, such as leukemia, cause abnormal blood cell production. A transplant of healthy bone marrow may correct these problems, restoring production of white blood cells, red blood cells, and platelets.

Donors receive an injection that increases the production of stem cells in bone marrow, so they can be collected via the bloodstream.

Hutchison pointed out that while curative, not all bone marrow transplants are successful.

“Often times it is the complete opposite. It has hard extremes and there is no guarantee that it will be a cure or that it will be easy for patients. But sometimes the likelihood is good and it is the only option,” Hutchison said.

The population dominating the registry is older – a problem because donations from young adults are most desirable. Hema-Quebec’s recruiting efforts have mostly turned to targeting young adults because transplants using young stem cells are less risky.

“The transplant is essentially giving your immune system to a patient,” Hutchison said. “The more exposure it has had to different things, the more likely there will be some complication within [the] patient, and the older you are, there is a greater likelihood that you have been exposed to infectious diseases [that] could be transmitted to the patient.”

Every year, doctors recommend between 85 and 100 Quebec patients for bone marrow transplants, though many of them are never completed. According to Diane Roy, director of Héma-Quebec’s stem cell donor registry, only 70 to 80 per cent of patients find donors.

Roy said that the 2,500 donors Héma-Quebec receives yearly sufficiently serves the medical need for stem cells, adding that any more volunteers would strain the organization’s testing and registration resources.

But the international registry benefits from a high number of donors, though it will need more in the future.

“We’ll need more [donors] down the road because as family sizes shrink, it is less likely that someone will find a match with siblings, and they’ll have to go to unrelated transplant,” Hutchison said.

Despite the desirability of young stem cells, Héma-Quebec does not hold marrow drives at universities and colleges. Roy said that even in the absence of drives, bone marrow donations are adequately publicized. He maintained that nurses at blood donation clinics on university campuses inform donors about bone marrow transplants.

Such immediate accessibility, Leblond-Murphy said, is key to increasing donation rates.

“People are much more likely to register when they’re directly handed a form and can automatically make a choice,” she said.

Leblond-Murphy now has several leads on potential donors. Doctors have told her that she can expect to receive either a bone marrow or core blood transplant within a few months. But she remains committed to making the registry more accessible and attracting new donors.

“My statistics [for recovery] increase dramatically with a bone marrow transplant, and it’s sort of cliché, but for me, it’s a difference between life and death,” Leblond-Murphy said.

“It’s important to [register] soon. Someone can join the registry tomorrow and be a more compatible match for me or someone else, and we want that. We’re looking for the highest match,” she added.

In the meantime, Leblond-Murphy is working freelance and undergoing periodic chemotherapy sessions to keep her leukemia in remission.

“I’m not preoccupied by it daily,” she said. “Maybe I should be. It’s definitely present, but it doesn’t stop me from living normally.”

…………………………..

What is bone marrow?

A soft material found in the centre of bones that produces stem cells.

Stem cells are parent cells from which all other blood cells – red blood cells, white blood cells, and platelets – develop.

It produces red and white blood cells that are essential for immunity and circulation. Anemia, leukemia, and lymphoma cancers compromise the resilience of bone marrow, making bone marrow transplants a growing treatment for such cases.

What is cord blood?

Blood in umbilical cords that provides stem cells.

3% population who donates blood
50 – 70% number of people who find bone marrow or core blood matches
25% chance that a patient will find donor within family
34,500 people listed in Quebec’s Stem Cell Donor Registry
21.3% survival rate for AML (1996 – 2004)
2,500 potential donors in Quebec each year
7 Quebec hospitals that freeze core blood to save stem cells

How to help out

To join the bone marrow donor registry, go to the Héma-Quebec web site (hema-quebec.qc.ca), click on “stem cells,” follow instructions, and fill out the consent form. Héma-Quebec will call the potential donor to set up an appointment to take a blood test and determine HLA complex, a combination of genetic markers. A potential donor will only be notified if they are compatible with someone who needs a donor. Donors must be between 18 and 50-years-old. There is a particular need for donors belonging to ethnic minorities.


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