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4 days ago · Donating Bone Marrow & How it is Used in Hematology

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Every year, thousands of people in the U.S. are diagnosed with life-threatening diseases, such as leukemia or lymphoma, for which a stem cell transplant is the best or the only treatment. Donated blood stem cells are needed for these transplants.

November is National Marrow Awareness month.

You might be considering donating blood or bone marrow because someone in your family needs a stem cell transplant and doctors think you might be a match for that person. Or perhaps you want to help someone else — maybe even someone you don’t know — who’s waiting for a stem cell transplant. Learn more about bone marrow donation at Mayo Clinic here.

Meet other Mayo Clinic Connect members talking about living or caring for someone with blood cancer or disorder in the following discussions:

Mon, Oct 22 10:00am · Multiple Myeloma: Patients and caregivers support meeting in Hematology

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Ilse Hein was diagnosed with multiple myeloma during a hospitalization for pneumonia in 1992 in her hometown of Barrington, Illinois. Encouraged by her local physicians, Ilse traveled to Rochester, Minnesota, and spent a week at Mayo Clinic.

After years of surveillance at Mayo Clinic, Ilse’s team of physicians recommended she participate in a new drug trial. Fortunately, Ilse’s multiple myeloma improved as a result of the trial. It was at that time she decided it was time to help other multiple myeloma patients.

As a myeloma patient advocate, @ilse worked hard to start a new project called Multiple Myeloma Mayo Mentorship, a face-to-face patient program, in addition to Mayo Clinic Connect, she hopes will give incoming patients added support with someone who has been in the same spot. 

“My goal is to give patients and caregivers information, hope, courage, understanding, and to provide emotional support,” Ilse says.

Ilse’s support group meets for the first time on Tuesday, November 6, 2018 and is open to anyone who has multiple myeloma or caregivers of those who have multiple myeloma. Additional details:

  • When: Tuesday, November 6, 2018
  • Where: Mayo Clinic Rochester – Gonda building, 10th floor room 160.
  • Time: 5pm to 6pm CT

Sign up for event reminders here.

“Choose a knowledgeable cancer team and specialist you trust and connect with. I wholeheartedly recommend Mayo Clinic. You will need your family, friends and your cancer team to be on your side through your cancer journey. Seek support from others, and never ever give up,” Ilse says.

In addition to Ilse’s support group, join Connect members discussing the diagnosis, treatment, and living with multiple myeloma:

Mon, Oct 15 10:00am · Young Cancer Patient Finds Answers (and “Rainbows”) at Mayo Clinic in Hematology

10_15_18 Alley Downing

Alley Downing was marking a milestone. She’d finished her last chemotherapy treatment, and to celebrate, she got a crown: a beautiful henna design that rested where her hair had been just months earlier.

The whirlwind journey to that royal ending started in April, when Alley began to feel tired. Really tired. Then she came home from track day at her school and told her mother, Tamra, that it hurt to take a breath. A trip to urgent care suggested inflammation of Alley’s trachea, but the medication she was prescribed didn’t help, and soon Alley was experiencing additional symptoms. She had migraines. Dizziness. Low blood pressure. More doctor appointments led to more medications, but no resolution. When Alley discovered an enlarged lymph node above her collar bone, her mother – who’d worked as a nurse and physician assistant before her children were born — started to panic.

“My alarm bells went off like crazy,” Tamra tells us. By this time, Alley was also having fevers and night sweats, and had lost five pounds in just a week. Yet doctors near the family’s Chicago-area home insisted Alley’s symptoms were likely related to a virus.

“I was feeling desperate,” Tamra says. “I felt it in my bones that something was wrong. My daughter felt it in her bones that something was wrong. But the whole time, no one was listening.”

That changed in early June, when Tamra brought Alley to Mayo Clinic’s Rochester campus. Within three days, doctors had a preliminary diagnosis: Hodgkin’s lymphoma. “At Mayo Clinic, I finally had doctors who listened to me and took my concerns seriously,” Tamra says. “I was so thankful we came up here.” Additional testing confirmed the diagnosis, and pediatric hematologist/oncologist Vilmarie Rodriguez, M.D., laid out a plan for treatment, which included surgery and chemotherapy.

Treatment wasn’t easy. Chemotherapy often left Alley feeling exhausted and nauseated. But there were bright spots along the way. One of them was Brighter Tomorrows, a nonprofit organization that supports families affected by childhood cancer. Another “cancer mom” invited Tamra and Alley to one of the group’s monthly meetings. “Alley wasn’t feeling well, so I told her we’d only stay for five minutes,” Tamra says. “We brought her in in a wheelchair. She felt horrible. She was sad. She was shy. But a group of girls came up to her like they’d known her forever. They were so encouraging to her, so loving to her. By the end of the night she was out of the wheelchair, having fun and making friends. She had a smile on her face.”

Tamra says she “fell in love” with Brighter Tomorrows that night. “It has been a godsend to me,” she says. “The people there have walked in our shoes. The support the organization gives is unbelievable.”

Also unbelievable, Tamra says, is Mayo Clinic, from the care providers who listen, to the art and music therapy programs that also put smiles on Alley’s face. (You can see that smile — and hear Alley sing — in this video). “Throughout this experience, there have been rainbows,” Tamra tells us. “It’s been a horrible experience, but a beautiful one.”

It’s an experience that continues. “Treatment is over and we’re so happy about that, but it’s not like this ends for her,” Tamra says. Alley still has side effects from treatment, including significant pain and weakness in her legs. Since chemotherapy can affect fertility, Alley may have difficulty someday becoming pregnant, and she had one of her ovaries removed and preserved in case she does. And though test results show she’s now cancer-free, Alley will need to be monitored for the rest of her life to make sure that remains the case. “Cancer is devastating for anybody,” Tamra says. “But when you’re 14, or 4, or 4 months, it’s a completely different thing.”

That’s something that has changed Alley’s perspective on life. “I feel like every day you should be thankful,” she tells us. “Live every day like it’s your last.”

You can see Alley’s art, including work she created during her treatment, here.

Meet others talking about living with Lymphoma on Connect

Read more patient stories on Mayo Clinic’s In the Loop

Tue, Sep 25 9:00am · Chimeric antigen receptor T cell therapy (CAR-T cell therapy): How it works and what is next in Hematology

Dr. Yi Lin, chair of the Cellular Therapeutics Cross-Disciplinary Group at the Mayo Clinic Cancer Center, explains how chimeric antigen receptor T cell therapy (CAR-T cell therapy) works and where the research is headed next.

Learn more about the basics of the breakthrough cancer treatment and where the research is heading next.

Connect with real members discussing their diagnoses in the Blood Cancers & Disorders group, as well as the CAR-T Cell Therapy group.

Lin, Yi M.D.

Thu, Sep 20 10:00am · Bone Marrow Transplant and CAR-T Cell Therapy Q&A in Hematology

Learn more about bone marrow transplants (BMT) and CAR-T therapy with Mohamed A. Kharfan Dabaja, M.D., M.B.A. Dr. Kharfan-Dabaja gives an overview of treatment options and then fields questions from Mayo Clinic Connect and Facebook members.

Bone marrow transplants are now also known as hematopoietic stem cell transplants. There are two types of hematopoietic (BMT) transplants, autologous and allogeneic.

An autologous transplantation is when a patient uses cells from their own body. The process for autologous transplantation is as follows:

  • Patient is given what are called growth factors to stimulate the bone marrow to expand the stem cell pool (4 to 5 days)
  • Patient is connected to an apheresis machine to remove the stem cells (usually 4 to 6 hours but can be longer)
  • After stem cells are administered, patient must stay near a Mayo Clinic facility for an average of 7-14 days for follow up

Allogeneic transplantation uses cells from a donor — typically a matched related donor such as a child or parent. The process for an allogeneic transplantation is as follows:

  • First, a suitable HLA (human leukocyte antigen) compatible donor match must be found
  • The donor must then be tested for any communicable diseases, as well as undergo a physical to ensure the donor is able to handle the procedure as well
  • The patient will undergo conditioning chemotherapy
  • After stem cells are administered, patients must stay near a Mayo Clinic facility for an average of 2 to 2 ½ months

Follow up appointments for each transplantation monitor for recovery and assessments of the disease. Also, appointments will monitor for infections due to the lowered immune systems because of the procedure itself.

CAR-T cell Therapy (chimeric antigen receptor T-cell)

3D-illustration-of-CAR-T-cell--eaf6d313-f954-48bb-ace4-b6ee2a068434-1602651669_pOur bodies contain cells, in this case T lymphocytes, that fight against infections and against cancer. Sometimes, those cells do not function properly or they do not recognize cancer cells. In short, CAR-T therapy isthe re-engineering of your T-cell lymphocytes:

  • Cells are taken from the patient
  • Cells are processed, or manufactured, by introducing cells that are present on the cancer cells
  • Cells are then reinfused in the patient

Patients must meet specific criteria for approved disease that qualify for CAR-T therapy, as well as physical exams to determine the patient can handle CAR-T therapy.

Tune in to the 8:30 minute mark of the video to watch Dr. Kharfan-Dabaja answer questions from Connect and Facebook members.

Click here or more information on CAR-T-cell therapy at Mayo Clinic or to request an appointment.

Thu, Sep 6 9:30am · Leukemia Survivor (and Her Daughter) Use Patient Experience to Help Others in Hematology

9_5_18_WilsonAngela

Five years ago, Angie Wilson discovered a small bump on her abdomen while taking a shower. “I didn’t think much of it,” she tells us. “It was the middle of August and I just figured it was a bug bite.” Two weeks later, the bump had gotten bigger. “At that point I reached out to my local dermatologist,” Angie says. “She was initially baffled and not quite sure what she was looking at.”

A week later, Angie’s dermatologist called to say she wanted to send the biopsy to Mayo Clinic for more testing. “You’re automatically put on red alert at that point,” Angie says. A few days later, a patient appointment coordinator from Mayo called Angie to tell her an appointment had been set up for her with hematologist Mrinal Patnaik, M.B.B.S. Angie, it seems, had a rare, aggressive and hard to treat form of acute myeloid leukemia. “I was in shock because I was otherwise healthy,” Angie says. “I exercise regularly. I eat well. I had a pregnancy with no complications. The diagnosis completely caught me off-guard.”

Dr. Patnaik recommended an aggressive treatment plan. And there was no time to waste. Angie went home for about a week, celebrated her 26th birthday, and returned to Mayo with her family. There, a team of doctors led by Dr. Patnaik and hematologist Saad Kenderian, M.B., Ch.B., began her treatment. Angie’s tumor was removed, followed by two rounds of chemotherapy, full-body radiation and, finally, a bone marrow transplant.

“I’ve never met her,” Angie says of her donor. “All I know is she’s female and from somewhere in the Midwest.” That donor helped Angie turn a potentially deadly diagnosis into a story of hope and healing. Five years after her diagnosis, Angie remains cancer-free.

Hope wasn’t easy to hold onto at times.

Angie’s treatment journey was complicated by a year-long bout of memory loss brought on by encephalitis, not to mention a secondary lymphoma diagnosis brought on by the prolonged suppression of her immune system.

Dr. Kenderian tells us Angie’s case is about as complex as it gets, which is why he asked her to come back to Mayo to share her experiences with medical students and trainees. “I’ve done three sessions so far and I’m not sure how much anyone is getting out of listening to me ramble on, but if it can help anybody then that’s the only goal,” Angie says.

Dr. Kenderian tells us it is helping. “Angie’s perspective is quite unique as it highlights the power and risk of immune therapies as a way to treat cancer,” he says. “I appreciate her willingness to share that ride and what she learned from it.”

Angie isn’t the only member of her family giving back to Mayo. Her young daughter, Carly, held a lemonade and cookie stand on Mayo’s behalf. “She raised and donated more than $100 to Mayo Clinic,” Angie tells us. “She mostly wanted to do it as a way of saying ‘thank you’ for everything Mayo’s done for our family.”

You can give something back to us by sharing your comments below. Then use the social media tools atop this page to share this story with others.

See more stories from In the Loop

Meet other members discussing Blood Cancers & Disorders:


Mon, Aug 20 10:00am · After Diagnosis, Patient Cycles Across the Country and Raises Money for Research in Hematology

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Although he had just been diagnosed with a rare blood cancer, Chris Edgerton was not about to slow down. Instead, the diagnosis pushed him to work toward a lofty goal.

Chris Edgerton was working in his garage when he started feeling unusually tired. “I was trying to put a screen up and I just couldn’t do it,” he tells us. Surprised but not overly concerned, Chris mentioned this to his doctor during his annual physical. “I told her I felt tired all the time and that was unusual for me,” Chris says. “I told her I didn’t feel like myself.”

Chris’ doctor sent him for blood work. Having worked as a nurse in his native England before moving to Florida, Chris didn’t have a good feeling about what the results would show. His suspicion was soon confirmed by his doctor, who recommended he see an oncologist/hematologist. Chris’ wife, Deirdre, took charge from there. “She said, ‘OK. Then we’re not messing around. We’re going straight to Mayo Clinic,'” Chris tells us. They soon met with Sikander Ailawadhi, M.D., an oncologist/hematologist at Mayo Clinic’s Florida campus. After a battery of tests, Chris was diagnosed with Waldenstrom macroglobulinemia, a rare, slow-growing blood cancer.

Chris didn’t want to take his illness lying down. He knew that his diagnosis was serious. But his bucket list beckoned, so he decided to focus on that. “Riding a bike across the United States has always been on that list,” he says.

So after agreeing with Dr. Ailawadhi on a “wait and watch” treatment plan, Chris got on his bike and started training. “I began by riding nine miles,” he tells us. “I had to stop and rest after the first five, so I knew I had some work to do.”

Then Chris found a company that organizes a cross-country bike trip each year, transporting bikers’ belongings from one hotel to the next, and even organizing meals. “I basically just had to cycle from hotel to hotel along the way,” Chris tells us.

On May 13, he set off on his journey. And though it wasn’t exactly a coast through the park, Chris tells us the memories he made, people he met, and money he raised for Waldenstrom macroglobulinemia awareness and research at Mayo Clinic, made all that pedaling worthwhile. “We met people all the way along, and I also met a few other people with my same disease who’d driven to some of the hotels just to say hello and cheer me on,” Chris says. “And for us to have raised, at the moment, almost $50,000 for Mayo Clinic is quite humbling. Those were things I never contemplated happening.”

Not bad for what Chris thought was going to be “just another” bike ride. “When I started I thought, ‘It’s a bicycle ride. A very long one, but just a bicycle ride,'” he tells us. “But it’s obviously turned into something more, and to have people who I’ve never met send such nice messages of support is beyond words.”

You can read more about Chris and his cross-country cycling adventure on his blog. Then, coast over to leave a comment below before using the social media tools atop this page to share this story with others.

Connect with members discussing Blood Cancers & Disorders

Check out more stories from In the Loop

Mon, Jul 23 6:50pm · In the Halls of Hematology: Meet Katrina Croghan in Hematology

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Katrina Croghan is Clinical Research Coordinator for the Mayo Clinic Cancer Center assigned to the division of Hematology in Rochester, Minnesota. She is no stranger to the medical field as her father is a Mayo Clinic Oncology consultant and her mother is an epidemiologist and collaborative scientist in community internal medicine. Due to her parents’ educational pursuits, she was born in Buffalo, New York, but was relocated at the age of four to Rochester, Minnesota.

“I’m a Minnesotan,” Katrina says. “I’ve made it through too many winters not to accept it.  When I was 13 years old I traveled to Washington DC with my school class and was told I have an accent.   I always told myself ‘I don’t have an accent’ but the older I get, the more the ‘long Os’ come out.  In fact, last month I was asked if I was Canadian, so I’ve come to terms with it.”

From New York to Minnesota, and from animal behavior sciences to clinical research coordinator, let’s get to know Katrina a bit better:

What does a Clinical Research Coordinator do?

Many people just think, ‘oh, you just coordinator things,’ but there is so much more to it than that. We are the liaisons between all parties involved in a research study, including the patient, the company and its clinical research office (CRO), the principle investigator(s) on site, and the regulatory bodies – such as the FDA regulations, IRB requirements and ICH guidelines.

So, making sure all parties are being accommodated while following regulations can be quite challenging.

What I appreciate is, especially at Mayo Clinic, we keep the patient in the forefront. Studies are a constant balancing act between what is best for the patient and what needs to be done for the study.

The one thing I always strive for is that our patients never feel like a number. No patient should ever feel like a number, especially in research. I work really hard behind the scenes to try and make a research study feel easy for the patient, because they are already dealing with so much.

How did you find your way to becoming a coordinator?

Well, actually, my BS degree is ecology and natural resources with an emphasis on wildlife biology and my masters focused on animal behavior. I tend to keep my degrees hidden.  I am very proud of my degrees I just can’t remember all the moving parts anymore.  Conversations become short lived.  I just haven’t kept up on Animal Behavior research.  Not to mention, it’s almost impossible to remember scientific tree names. 7_24_18_KatrinaCroghan_Tree

Kidding aside, after I got my masters, I originally wanted to pursue my PhD in higher education, because I wanted to teach science teachers how to teach science. While waiting, it was suggested to me that I apply for a supplemental position as a research coordinator because of my knowledge of writing protocols and conducting research.

For a short time, I worked as a float research coordinator.  I would go to departments that needed research coordinators. Along the way, I learned many different aspects of being a coordinator. It wasn’t until I had the opportunity to work  with Dr. Gertz on an Amyloidosis study that I thoroughly enjoyed working with the patient population and made a more permanent switch to hematology in 2015.

As you mentioned, patients are at the forefront of clinical research. What is your role with the patient?

Our job is to make sure a patient not only understands the risk factors of trial participation, but to make sure they understand the integrity of the study as well. Consent forms are usually 25-30 pages long and filled with a daunting amount of details.

It is our job to make sure they don’t feel pressured to do a study. Then, we have to verify that the patient understands what he or she is signing up for. Everything in research is voluntary and the patient can stop the study at any time.

Beyond scheduling, it seems that building relationships with study participants is an integral part of a coordinators role.

Coordinators often become the front line for patients because they feel more comfortable with us. We create relationships with a lot of our patients, especially in hematology, because we may see some of our participants over many years and sometimes on multiple trials. Getting to know participants helps the patient feel more comfortable and can increase the accuracy of the data collected in the study.

When explaining a study with a patient, what are some of the common concerns a patient may express?

It is a bit different with hematology patients. Because patients may be facing such a rare, complex disease, often times, there are not many apprehensions about participating in a clinical drug study. One common concern is often travel. Another is how many visits and how often a patient has to be on-site.

In regards to hematology patients, it is the closest representation of altruism I have ever experienced as a coordinator. These patients, especially with rare diseases, are not always concerned with how it benefits them, but rather how it will help their family members or others who may get or express the disease.

A common misconception regarding all studies is that all travel and drug costs will be reimbursed. While this may be the true for some studies, it is not universal for all studies. That is an important part of each study I make sure to discuss with each patient thoroughly before consent. Because the consent document is so long and complex, we often revisit this topic multiple times during visits to help keep the patient informed throughout the study.

From a medical aspect, what do you find interesting in regards to the research itself?

It is amazing to watch a drug go from phase I all the way through to FDA approval. It is also encouraging that when I started some of the rare diseases had little to no treatment, but now have multiple studies and trials advancing to FDA approval. It gets back to the altruism that many of the participants exhibit. The future generations will have far more treatment options as a result of patient participation and the clinical research they make possible.

When you are not working, what is your favorite way to spend your time?

I have something I have termed ‘the Croghan syndrome.’ My parents are incredibly hard-working individuals and I have acquired their work ethic as well. My mom emigrated from Italy and my dad was a farm boy from Indiana. Their hard work to get where they are today continues to be a huge influence on me.

I strive for work/life balance, though I sometimes struggle. Because of this, I spend most of my time at home hanging out with my kids. I just love watching them play and try to figure out the world. I’m convinced my son wants to be an ichthyologist because he is fascinated by fish and loves fishing with grandpa, which is funny because I researched fish for my animal behavior degree. Unfortunately for him, I had to care for 400 guppies during my research and have no desire for another fish tank any time soon! My daughter has an knack for the outdoors and refuses to come inside once she is outside. She really loves taking care of a garden.

At the end of the day, what is the best part of your job?

Often times, it is the involvement of the family. Most families are incredibly supportive and want to meet the doctors and want it to be a learning experience. Their encouragement and involvement is a beautiful thing to see. The other simple answer is watching the drugs or study benefit the patient.

Additional resources: