Editor's note: The Mayo Clinic Connect volunteer mentor featured in this story has asked that her Connect handle — @LoriBMT — be used in place of her name.

In 2019, 65-year-old @LoriBMT sat in a Mayo Clinic lab area awaiting her turn for blood work. She had been in the hospital for more than six weeks following a bone marrow transplant.

@LoriBMT is a positive person, but after weeks of feeling tired and week, she wasn't sure she would ever feel healthy again. When she looked in the mirror, she saw a bald head and pale, saggy skin.

Then a woman in the waiting room struck up a conversation and shared that she, too, had undergone a bone marrow transplant and was there for her two-year checkup.

"She was healthy. She had hair. She was a little bit tan. She looked like this font of energy," says @LoriBMT. "Then the guy next to her said: 'No kidding. I'm here for my five-year checkup.' I walked away from that conversation so inspired and encouraged — filled with hope. I can be this person. There is life after this."

The making of a mentor

@LoriBMT had been diagnosed with acute myeloid leukemia, also known as acute myelogenous leukemia, or AML. This cancer of the blood and bone progresses rapidly.

"I was perfectly healthy. And then within three weeks, had I not been rushed to the hospital for a blood transfusion, I wouldn't have made it to the next morning," she says. "AML can come on very quickly."

The first phase of @LoriBMT's treatment began near her home in Appleton, Wisconsin, with eight weeks of chemotherapy in the hospital to put her leukemia into remission. Because her leukemia-producing bone marrow cells had undergone chromosome changes, @LoriBMT needed a bone marrow transplant to replace them with leukemia-free cells that would regenerate healthy bone marrow. She decided to go to Mayo Clinic in Rochester, Minnesota, for her transplant. There, she received infusions of stem cells from a compatible donor, known as an allogeneic transplant. This was phase two — consolidation therapy — considered crucial to decrease the risk of relapse.

@LoriBMT's grueling treatment was successful, and her experience in the Mayo Clinic waiting room inspired her to help other people navigate leukemia and bone marrow transplant. While searching for ways to help, Lori discovered Mayo Clinic Connect, an online support community for patients and caregivers.

After a year giving informal support to other people with leukemia, Mayo Clinic Connect community moderators asked her to become a volunteer mentor. Connect volunteer mentors are active members in the community who have firsthand experience with a health condition. They welcome and support new members, check in on them and moderate discussions.

"If I can help, I do," says @LoriBMT. "I only hesitated a nanosecond when asked to be a mentor."

Same diagnosis, 46 years apart

Sky Toyne, a 19-year-old college student at Iowa State University in Ames, Iowa, had been experiencing odd symptoms for several weeks in fall 2021. When she finally found time to visit a health care professional, the care team took blood samples.

"Worried looks were exchanged, and bloodwork was drawn again," says Sky.

Sky's next stop was the Emergency Department at Mary Greeley Medical Center in Ames, where a hematologist asked her a series of questions:

• Had she felt more fatigued lately?
• Was she paler than usual?
• Did she bruise easily?

Sky's answers resulted in a trip to the oncology floor. She remembers needing to look up the meaning of the word "oncology."

A bone marrow biopsy confirmed a diagnosis of acute myeloid leukemia, and the prognosis was challenging. She would need a bone marrow transplant to give her the best chance of survival. She recalls her oncologist telling her, "You're going to have to put on your boxing gloves and fight."

"She had some molecular and chromosome changes that are considered high-risk," says William Hogan, M.B., B.Ch., a Mayo Clinic hematologist. "And even though she achieved a first remission, the risk of relapsing later is high. That was the rationale for considering transplant."

As an Asian American, Sky also had a lower chance of finding a bone marrow donor match in the national bone marrow donation registry. Fortunately, her brother was able to donate his bone marrow as a half match for Sky's allogeneic transplant. "Sibling match — that's our first choice," says Dr. Hogan. "There's a 1 in 4 chance that your brother or sister would be a full match. And there's a 50% chance that they would be a half-match."

Sky completed remission induction therapy at Mary Greeley Medical Center and went to Mayo Clinic for consolidation therapy, which included a bone marrow transplant in February.

Finding mentorship on Mayo Clinic Connect

Sky's oncologist at Mary Greeley Medical Center did his best to prepare Sky and her family for the intense therapy she would need.

"He said: 'You're starting a marathon. This is not going to be something where you're in the hospital and you're out and you're done.' He really set the tone for us. We understood that this was going to take all our energy and require all our focus," says Mari Toyne, Sky's mom.

Sky's parents worked together to learn as much as they could about acute myeloid leukemia and bone marrow transplant. Mari learned about Mayo Clinic Connect through patient materials she received from Mayo Clinic. She created an account and discovered a post from @LoriBMT about her leukemia experience. She took a chance and commented on one of @LoriBMT's posts.

"She reached out right away," says Mari. "It was so nice talking to someone on the other side. We talked to all the doctors, nurses and technicians. They can tell us clinically what was happening and what was going to happen. But talking to @LoriBMT — she was so inspiring. It was encouraging to talk to someone who had lived through it."

"We discussed a lot of potential issues that can happen," says @LoriBMT. "I said she's going to have some really bad days. Some days, I can move mountains, and other days I feel like I'm in a pit where there are bulldozers pushing gravel on me. Bone marrow transplant — it's not for the faint of heart."

Mari joined other groups online, including some specifically for parents of bone marrow transplant patients, but she says none have been as helpful as having @LoriBMT as a mentor.

"We can contact her and ask, 'Did you go through all this stuff?' and she explains her experience. From her symptoms to the mucositis, to the headaches to the bone pain — she covered all of that for us. So we knew what was normal and what we should expect. I can't express how incredibly helpful that was," says Mari.

Dr. Hogan agrees. "There is no substitute for talking to somebody who's gone through bone marrow transplant. Having a person you can relate to one on one — who can describe what it's like getting chemotherapy, radiation therapy or transplant, and going through some of the side effects — makes things a lot easier to understand and anticipate what will be involved. And seeing somebody who had a successful outcome provides real inspiration and hope during the difficult days," he says.

Meeting in person sparks true connection

Before Sky's transplant, @LoriBMT contacted Mari to check in and mentioned that she had an upcoming appointment at Mayo Clinic in Rochester. Sky and her family were going to be there at the same time, so @LoriBMT suggested meeting.

"At this point, we were kind of down. It was pretransplant, and we didn't know what to expect. It was kind of scary," says Mari.

They met in a patient lounge in the Charlton Building.

"I don't know what they were expecting," says @LoriBMT. "I'm 68, but I'm not old. I have all this energy. I introduced myself, and I just felt their sense of relief. We sat there for like an hour and a half just talking."

Sky and @LoriBMT had exchanged messages a few times, but meeting in person was especially meaningful.

"When you go through these experiences, it's very isolating," says Sky. "Being able to see someone walking and breathing that had already gone through everything I was about to go through with the transplant was really cool. I actually got to see someone who had experienced it all, and @LoriBMT is an awesome image of life after transplant because she's healthier than most people who haven't been through what we've gone through — and she's 68."

"Sky and I connected on a visceral level," says @LoriBMT. "I'd say: 'I bet you're at the point where you're really sick and tired of people telling you how brave you are. And every morning you go out and you're just trying to get through five minutes at a time.' And she'd say: 'Yeah! Oh, my gosh, I think you're in my head.'"

"@LoriBMT and I really latched on to each other because I think we are both very stubborn," says Sky. "One of the first things I told my parents was that I was not going to die from this. It's just not going to happen."

"Sky and I just bonded," says @LoriBMT. "I'm so amazed by the presence of this young woman. She has a very deep, abiding faith that she's going to make it through this."

The spirit of endurance

@LoriBMT and Sky continued to connect regularly after meeting in person. At one point, as Sky was recovering from her transplant, she asked @LoriBMT to share how she found her will to live.

@LoriBMT wrote Sky a letter explaining how she was able to endure her diagnosis and treatment.

"I changed it from 'will to live' to 'spirit of endurance,'" she says. "You never stop pushing yourself to keep going. That is the spirit of endurance. That plays a huge role in people. I never wanted to die, and I never gave up, but there were days when I asked, 'Oh, my God, how does a human being come back from this?' But if you don't like something, then you make a change. That's what keeps pushing me forward. I'm not going to let cancer take me down if I have an opportunity to go past it. The only two things we really have control over are our effort and our attitude."

Mari and Sky are grateful for @LoriBMT's mentorship and generosity. Mari encourages others to seek out patient mentors on Mayo Clinic Connect.

"I highly encourage people to at least check it out, even if they don't write anything," says Mari. "The information there is very, very helpful."

The people there are helpful, as well. Describing her commitment to her role as a connect mentor, @LoriBMT says, "I honestly feel like this is one of the reasons I was spared."

Learn more

Learn more about acute myeloid leukemia and bone marrow transplant, and find an acute myeloid leukemia clinical trial at Mayo Clinic.

Join Mayo Clinic Connect and learn how to become a Connect Volunteer Mentor.

Also read these articles:

• "Leukemia: A cancer that affects children and adults."
• "Diversity in bone marrow transplantation gives gift of life to mom of five."
• “Mayo Clinic Minute: Bone marrow diversity is needed.”

The post Mayo Clinic Connect brings together 2 women with leukemia, 46 years apart appeared first on Mayo Clinic News Network.

Mayo Clinic performed its first bone marrow transplant in 1963 and today hundreds of people receive blood and marrow transplants every year at Mayo Clinic in Arizona, Florida and Minnesota. Recently, Mayo Clinic in Rochester, Minnesota celebrated its 10,000^th blood and marrow transplant.

Bone marrow transplant is used to treat blood cancers and related disorders by infusing healthy blood-forming stem cells into your body to replace unhealthy bone marrow. A bone marrow transplant is also called a stem cell transplant. Bone marrow transplants may use cells from your own body, called autologous transplant, or from a donor, known as allogeneic transplant.

Autologous stem cell transplants are typically used in people who are producing enough bone marrow but need to undergo high doses of chemotherapy and radiation to cure their disease. These treatments are likely to damage the bone marrow. Prior to treatment, healthy bone marrow cells are collected, frozen and stored for later use. After treatment, the stem cells are infused back into the patient to repopulate the bone marrow.

Allogeneic Bone Marrow Transplant

Allogeneic bone marrow transplant is used when there is underlying bone marrow failure syndrome or for certain types of bone cancers and blood cancers. In those cases, donor bone marrow is needed to replace the diseased bone marrow.

One common complication of allogenic transplant is developing graft versus host disease. This condition occurs when the donor stem cells see the body's tissues and organs as something foreign and attack them. Researchers have now discovered metabolic markers that can predict a person's risk for developing severe graft versus host disease, allowing for a more personalized treatment approach.

"Graft versus host disease occurs in patients that have had an allogeneic transplant from a donor," explains Dr. William Hogan, director of the Mayo Clinic Blood and Bone Marrow Transplant Program in Minnesota. "And this is where the donor immune system doesn't just recognize the leukemia that we're trying to treat — which is what we want — but it also attacks the patient's normal tissues. This can be anything from a relatively mild to a very devastating problem that can occur after transplant. And one of the challenges was that, by the time that has been fully developed, then it's harder to treat. So one of the goals of research in the last few years has been to develop markers that will tell us which patients are at risk of having the most severe graft versus host disease, and allowing us to target more effective treatment toward those patients."

Other recent advances in blood and bone marrow transplant include the use of mismatched donors and the ability to use bone marrow transplant in older, more frail patients thanks to improvements in antibiotics, antifungal drugs and other medications.

CAR-T Therapy

Another cellular therapy that is helping treat blood disorders and cancers is chimeric antigen receptor-T cell (CAR-T) therapy. CAR-T involves taking the T cells from a person and reengineering them to recognize and destroy cancer cells.

"CAR-T therapy is a very interesting therapy," says Dr. Hogan. "It's really come to fruition in the last five to 10 years. This is similar to bone marrow transplant, but not quite the same. It's a cellular-based therapy, so not a drug, but using cells that are modified in order to try and treat leukemias and other cancers. And basically, what it does is it takes our native immune system — and then the T cells specifically — and modifies them so that they are much more effective at recognizing targets that are on leukemia cells or other malignant cells. And that really kind of allows us to use the native immune system in a much more effective way of trying to kill leukemias."

Dr. Hogan says CAR-T therapy also is being developed for noncancerous conditions, like aplastic anemia, and research is looking at CAR-T as a treatment for a particular form of inflammatory multiple sclerosis.

"Things have really been transformed over the last five to 10 years with the advent of CAR-T therapy which has been groundbreaking," says Dr. Hogan. "The field of blood and bone marrow transplant continues to move forward, creating more effective treatments with less toxicity for many patients."

On the Mayo Clinic Q&A podcast, Dr. Hogan discusses advances in bone marrow transplant and cellular therapy, including CAR-T.

Related articles:

• "Expert alert: Five key medical advances related to bone marrow transplantation."
• "Mayo Clinic Minute: Why bone marrow donor diversity is needed."

Watch: Dr. Hogan discuss bone marrow transplant.

Read the full transcript.

For the safety of its patients, staff and visitors, Mayo Clinic has strict masking policies in place. Anyone shown without a mask was either recorded prior to COVID-19 or recorded in a nonpatient care area where social distancing and other safety protocols were followed.

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Mayo Clinic marks its 10,000 blood and marrow transplant in Minnesota

ROCHESTER, Minn. — In the six decades since blood and marrow transplantation was used to treat patients with blood cancers, this once experimental treatment has become a vital cancer-fighting tool. Mayo Clinic in Rochester, Minnesota, is celebrating the 10,000^th blood and marrow transplant used in the treatment of blood cancers and related disorders.

Mayo Clinic performed its first bone marrow transplant in 1963. Today, hundreds of people receive blood and marrow transplants every year at Mayo Clinic in Arizona, Florida and Minnesota.

This latest milestone is a time for reflection on the impact this treatment has had on the lives of many patients and families. But it is also important to continuously strive to improve the therapy to make it safer and more effective by incorporating new research and other promising developments, says William Hogan, M.B., B.Ch., director of Mayo Clinic’s Blood and Marrow Transplant Program in Minnesota.

"It was only with the major contributions of many patients, nurses, researchers and providers over many decades that blood and marrow transplants have been developed into an effective treatment for so many," Dr. Hogan says. "It is awe-inspiring to reflect on the impact of this therapy on so many patients over the past 60 years. We look forward to an era of rapid innovation and providing even better patient-centric therapies for a range of devastating diseases."

Here are five of the most promising advances in blood and marrow transplantation, including new ways of treating blood cancers:

1. Use of mismatched donors:

Blood and marrow transplantation  infuses healthy blood-forming stem cells into the body to replace bone marrow that has an underlying malignancy or defect that makes it unable to function normally. It is one of the first forms of regenerative medicine. The stem cells can come from a person’s own cells – known as an autologous transplant, and this is an effective strategy for many blood cancers, such as lymphoma and multiple myeloma. However, if the bone marrow is already compromised by certain cancers or is failing for other reasons, then a transplant from a donor called an allogeneic transplant may be more appropriate. Fully matched donors, such as a matched sibling, were the safest option initially. But thanks to recent advances, less well-matched donors, such as half-matched family members, are often considered.

2. Reduced-intensity conditioning:

Many cancers affect older people, but blood and marrow transplants were previously limited to young people. Older people not healthy enough for a blood or marrow transplant now have more options thanks to an approach that provides lower doses of chemotherapy and radiation before a transplant.

3. CAR-T cell therapy:

Chimeric antigen receptor-T cell (CAR-T cell) therapy is a newer form of cell therapy used to fight cancer. The procedure involves taking the T cells from a person and reengineering them to recognize and destroy cancer cells. This immunotherapy treatment has been especially helpful in treating blood disorders, such as leukemia, lymphoma and multiple myeloma, and is rapidly expanding to other cancers.

4. Biomarkers to recognize serious complications early:

Researchers have discovered metabolic markers that can predict an individual's risk for developing severe graft-versus-host disease — a serious complication of blood and marrow transplants in which the donor’s immune cells start to attack the recipient’s healthy tissues. This allows prompt personalized treatment.

5. Using bone marrow transplants to treat other conditions:

Mayo Clinic researchers are examining whether stem cell transplants can treat other conditions, such as multiple sclerosis.

While these advances are heartening, the need for more bone marrow donors — especially from people from diverse racial and ethnic backgrounds — remains strong. The key is encouraging more people to register to become a donor at Bethematch.org.

JOURNALISTS: Several Mayo Clinic transplant experts are available for interviews:

• William Hogan, M.B., B.Ch., hematologist, oncologist and director of Mayo Clinic Blood and Bone Marrow Transplant Program in Minnesota.
• Mohamed Kharfan Dabaja, M.D., hematologist, oncologist and director of Mayo Clinic’s Blood and Marrow Transplantation and Cellular Therapy Program in Florida.
• Yi Lin, M.D., Ph.D., hematologist, oncologist and medical director of Mayo Clinic’s Immune Effector Cell Program in Minnesota.

In addition, B-Roll of a celebration event including Mayo's very first bone marrow transplant recipient, Nancy Mclain and Robert Kyle, M.D., who performed the procedure is available in downloads below. Journalists who would like to access the video can register with the News Network here.

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About Mayo Clinic    
Mayo Clinic is a nonprofit organization committed to innovation in clinical practice, education and research, and providing compassion, expertise and answers to everyone who needs healing. Visit the Mayo Clinic News Network for additional Mayo Clinic news. 

Media contact:

• Heather Carlson Kehren, Mayo Clinic Communications, newsbureau@mayo.edu

The post Expert alert: Five key medical advances related to bone marrow transplantation appeared first on Mayo Clinic News Network.

A bone marrow transplant is a procedure that infuses healthy blood-forming stem cells into your body to replace your damaged or diseased bone marrow. Bone marrow transplants may use cells from your own body (autologous transplant) or from a donor (allogeneic transplant). Bone marrow transplants can benefit people with a variety of both cancerous (malignant) and noncancerous (benign) diseases. On the Mayo Clinic Radio program, Dr. William Hogan, director of the Mayo Clinic Bone Marrow Transplant program, discusses bone marrow transplant. Also on the program, Dr. Lauren Dalvin, a Mayo Clinic ophthalmologist, and Dr. Waleed Brinjikji, a Mayo Clinic radiologist, explain treatment for retinoblastoma, the most common form of eye cancer in children. And Adam Shultz, a Mayo Clinic cardio-oncology rehabilitation specialist, explains how cardio-oncology rehab can help cancer patients recover and deal with treatment side effects.

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The Mayo Clinic Radio program shares the latest information on the COVID-19 (coronavirus) pandemic. On this week's program, Dr. Gregory Poland, an infectious diseases expert and head of Mayo Clinic's Vaccine Research Group, answers listeners' coronavirus questions. Also on the program, Dr. Elizabeth Cozine, a Mayo Clinic family medicine physician, highlights the importance of eating well, exercising daily, and getting enough sleep to stay well during social distancing. Next, Dr. Joseph Sirven, a Mayo Clinic neurologist, shares important thoughts for patients with neurologic condition like epilepsy, seizures and migraine headaches. And Dr. William Hogan, director of the Mayo Clinic Bone Marrow Transplant program, explains how the coronavirus pandemic is affecting bone marrow transplant patients.

Click the player below:

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Here's your Mayo Clinic Radio podcast.

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Multiple sclerosis, commonly known as MS, is a potentially disabling disease of the central nervous system. March is Multiple Sclerosis Awareness Month, and, on the Mayo Clinic Radio podcast, Dr. Mark Keegan, a neurologist and MS division chair at Mayo Clinic, discusses treatment options for MS. Also on the program, cardiologist Dr. Rekha Mankad explains why caution should be used when taking nonsteroidal anti-inflammatory drugs such as ibuprofen. And Dr. William Hogan, director of the Mayo Clinic Bone Marrow Transplant Program, shares how and why a bone marrow transplant is done.

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Here's the Mayo Clinic Radio podcast.

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Listen to the program on Saturday, March 4, at 9:05 a.m. CST, and follow #MayoClinicRadio.

Mayo Clinic Radio is on iHeartRadio.

Access archived shows.

Mayo Clinic Radio produces a weekly one-hour radio program highlighting health and medical information from Mayo Clinic.

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Listen to the program on Saturday, March 4, at 9:05 a.m. CST.

Miss the show?  Here's the Mayo Clinic Radio podcast.

Follow #MayoClinicRadio, and tweet your questions.

Mayo Clinic Radio is on iHeartRadio.

Mayo Clinic Radio produces a weekly one-hour radio program highlighting health and medical information from Mayo Clinic.

Access archived shows.

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