Ed Plass and his impact with Be The Match

Show Content

In December of 2011, at the age of 68, Ed underwent an unrelated cord blood transplant to treat acute myelogenous leukemia, a life-threatening blood cancer.  Transplant is a rigorous treatment that requires a lengthy hospital stay and months to years of recovery.  As a survivor of this intensely difficult treatment, he has dedicated much of his life to helping others going through the same process. Ed’s wife Kate was his primary caregiver and a huge part of his transplant and recovery. She has stood by his side throughout this journey, and has also dedicated much of her time to advocating for Be The Match with Ed. “Our oldest grandchild was 6 years old and the youngest was just 9 months when I had my transplant,” commented Ed. “I’ve been able watch them grow up and they’ve had the chance to know their grandfather as a person, not a picture.” Many of Ed’s experiences with transplant, recovery, and advocacy has been a family effort.

Ed is part of the Be The Match peer to peer counseling program for transplant patients, helps edit educational and support material, was on the Leadership Council for several years, helping with legislative advocacy, donor recruitment and tabling events. He speaks to other patients who are anticipating transplant about his own experience and helps ease their fears, answer their questions and provide the kind of encouragement that only a survivor can give. His wife Kate has also spoken at these events from a caregiver’s perspective. He meets with social workers and other staff members to ensure that they know how best to support patients going through the same treatment that he did. It is difficult to explain the impact that Ed makes on the patients who look to him for support, except to say that in this volunteer role he uses himself and his experience with transplant to connect with people who desperately need support.

Ed says his transplant has given him the gift of life and the gift of time. And he’s making the most of it. In addition to spending time with family, he is very active in his church and has volunteered over 400 hours with Be The Match: connecting with patients, transplant centers and legislators. He and his wife have been very generous with financial gifts to Be The Match as well, as they understand that supporting patient assistance, recruitment and research is so important.  “After my transplant, I’m more aware of the issues which people [like me] can face, and I’m trying to give back,” said Ed.

We need more people to make an impact like Ed, and support patients like him. You could make an impact by signing up for a monthly gift. A reliable monthly gift will help more patients receive marrow transplants, expand the Be The Match Registry, and provide financial resources to patients and families in need Join us in our life saving mission and give a monthly gift today.

My Sickle Cell Warrior Story: Memories of living with sickle cell disease and a life-changing decision

Posted June 19th, 2018 by Be The Match and filed in Patient Stories
Show Content

I have lived sickle cell free for nine years.

When I think about my life with sickle cell (SC), I remember my first day of kindergarten–closing my eyes to check if I was feeling pain anywhere in my body. I did not. I was feeling completely normal. That was the last time I would have that feeling for a long time.

My second memory was a nurse giving me a shot, and being surprised I didn’t cry or even flinch.

I told her there was no point in crying over the things you cannot change. I was resigned to living with pain from SC for the rest of my life.

In high school, every morning started with turning off the alarm, rolling over and taking a bunch of pills: hydroxyurea, penicillin and oxycodone. I even took the painkillers to school, to deal with the pain.

The pain was like slamming your finger in a door: the initial sharp pain, followed by a dull ache. The dull ache was my daily life. The sharp pain was a pain crisis.

When I was 16, I remember sitting down to dinner with my family. My dad said, “Your doctor told me about a doctor in Pittsburgh who is curing people with sickle cell disease. I want you to have a transplant.”

I didn’t know what a “transplant” was. I was looking forward to graduation, and applying to colleges. I had a life. I didn’t want to interrupt my plans for a “transplant.”

Then one day I had a pain crisis that landed me in the hospital. My doctors told me I had to be on blood thinners for the rest of my life. Then they couldn’t find a vein. I thought about a life in and out of hospitals, all the needles, all pills, all the pain.

That’s when I began to seriously consider a bone marrow transplant.

When I arrived at the transplant center to meet my doctor and the rest of the team, I thought they’d tell me how great transplant was and how fabulous I would feel afterwards. But they kept talking about what it involved, chemotherapy, isolation, and potential side effects. It sounded horrible. But they wanted me to understand what to expect. I just wanted to feel better. All I cared about was, can you fix my sickle cell and can you reverse the damage that it has done already?

Fortunately for me, my sister was a perfect match for me.  I went ahead and had the transplant. It was difficult, but the hardest part came afterward. I was immune-compromised on my 18th birthday. I had a huge chocolate cake I couldn’t eat. I had gifts I didn’t care about. I was worried about losing my insurance coverage because I turned 18. My mom had lost her job in Chicago because she spent so much time caring for me. Financially, it was very challenging, but our social workers helped us find grants and resources and our family helped fundraise. On top of all that, I was missing college interviews.

It took about a year after my transplant to accept that I no longer had SCD. It had been part of my life for so long, I had to figure out who I was without the disease. I had to unlearn old habits. Recovery was gradual, but eventually, my siblings were able to stop being careful around me, and my parents could breathe a sigh of relief.

My one regret is that I did not freeze my eggs before treatment, but having children was not my priority at 16.

Learning to adapt to life without sickle cell has been difficult, but life continues to get better. Sharing my story helps. I’m grateful for the experience and thankful to be alive.

 

 

 

 

 

Tips for traveling well after transplant

Show Content

No matter what the length of your trip ─ a short road trip or a global adventure ─ the key to traveling well after transplant is careful preparation, including having plans in place to access medical care should you need it.

Managing your special medical needs

Chris, transplant recipient

Tell your transplant doctor or primary care doctor about your travel plans. It’s a good idea to talk to your doctor before you schedule your trip to make sure they think you’re healthy enough to travel.

Experts also recommend that you take a letter from your doctor and a list of your current medicines with you.

“I always travel with a letter from my doctor that explains my health history, my condition, the list of medicines I’m on and my most recent blood test results,” says Chris, who began to travel again about 2 years after her transplant.

If you’re traveling to a different country, have the letter and list of medicines translated into the language of the country you’ll be visiting.

It’s also a good idea to carry emergency contact numbers with you, along with an after-hours phone number for your medical team. If you wear a medical alert bracelet, be sure that information is up-to-date. And don’t forget to bring your insurance information with you.

Help your immune system do its job

Even if you are years out from your transplant, your immune system may not be at full strength. Ask your doctor what precautions you should take if you’re flying, staying in a hotel room, or visiting a beach.

The first time Chris took a long flight, she wore a mask and gloves as a precaution. And when she arrives in a hotel room, Chris also wipes down all of the hard surfaces ─ like faucets, sinks, toilet seats, countertops and desks ─ with disposable sanitary wipes.

Chris says that when she travels with a tour group, she contacts them ahead of time. “I’ll explain that my immune system is weak and that there are certain restrictions I have, especially with food,” she explains. “They’re really good about making sure that everything is okay for me to eat.”

Medicines and medical emergencies

Make sure you have enough medicine with you to last the whole time you’ll be away. Take all medicines with you in their original containers, and if you’re flying, pack your medicines in your carry-on bag.

Traveling on a cruise ship is not recommended because medical services onboard can be very limited. And even the medical services available when the ship docks at a port may not be enough to meet your unique medical needs.

Also, consider buying 2 types of travel insurance:

  1. Trip cancellation insurance. Because complications can develop even years after a transplant, it’s wise to buy trip cancellation insurance in case an unforeseen medical issue forces you to cancel your trip.
  2. Supplemental medical insurance. This can help in case you need care outside of your home country. And even if your trip doesn’t cross a border, medical care outside of your health insurance company’s designated network is expensive.

Do some research and find out where the nearest hospital or transplant center is at your destination, in case of an emergency. Mike, another transplant recipient and frequent traveler, needed to go to the hospital while he was on a trip to Florida. His pre-trip preparation helped him quickly get the medical help he needed.

Because Mike was going to be away from home and his transplant doctor for several months, his doctor connected him with another transplant doctor in Florida. “He gave him all of my files and asked him to be my doctor if needed,” Mike says. “It was a good thing we had done that because I had some severe respiratory issues and needed treatment.”

Take it slow

Although you may be tempted to let your guard down and “just have fun” while you’re away from home, continue to follow your doctor’s advice. Take your medicines on schedule, and eat and drink according to your doctor’s recommendations.

Also be sure to protect yourself from the sun and bug bites. If your immune system is weak, avoid dirty and crowded locations as well as lakes, pools and hot tubs. If you’re headed to a beach location, wearing shoes may help protect your feet from cuts or scrapes when you walk along the shoreline.

Ask a traveling companion to support you in making good choices so you can have fun without taking unnecessary risks with your health.

A pre-travel checklist

When you’re packing for your trip, make sure you have:

  • A summary of your medical condition and treatment
  • Your vaccination records
  • Enough of your medicines to last your whole trip
  • Copies of your prescriptions
  • Your insurance information/card
  • Emergency contact information

Questions to ask your doctor

Before you make any travel plans, ask your doctor:

  • Am I healthy enough to travel in this country? In another country?
  • What specific precautions should I take because of my stage of recovery?
  • How do I reach my transplant team while I’m traveling?
  • What clinical documents should I take with me?

For more information:

Summer Safety: Take Steps to Take Care of Yourself

Show Content

With all you’ve been through, or are going through, it’s important to enjoy the simple pleasures of life after transplant. The warmth of the sun, the fresh summertime air, an outdoor barbeque with family and friends.

By taking a few special precautions, you can enjoy the summertime and protect your health. Read on to learn about ways to stay healthy this summer.

Ines, transplant recipient

Reducing your exposure to UV rays

The strong summertime sun can damage anyone’s skin. But as a transplant recipient, a sunburn is a much bigger deal for you than it is to others. That’s because sunlight can trigger graft-versus-host disease (GVHD), even years after transplant.

To lower your risk of GVHD, you’ll need to avoid the sun as much as possible. But that doesn’t mean staying indoors all the time. Just following these common sense steps:

  • Wear a hat, sunglasses, long sleeves and pants when you go out
  • Apply sun protection factor (SPF) 50 or higher sunscreen on any exposed skin before heading out
  • Wear sun-protective clothing (Note: Not all clothing gives you the same protection. Look for clothing that has a high Ultraviolet Protection Factor (UPF). Learn more.)

“Avoiding sun exposure should be life-long,” says Dr. Linda Burns, Vice President and Medical Director, Health Services Research at the National Marrow Donor Program®/Be The Match®. “We know, in addition to burning the skin, that sun exposure increases the risk of certain types of skin cancer.”

And don’t forget that even on a cool, overcast day the sun is just as harmful as on a hot, bright day.

Avoiding food-borne illnesses

Foodborne illnesses increase in the summer months because bacteria can multiply faster at warmer, more humid temperatures. Also, safe food handling is more difficult when food is prepared outside, as it often is at a summertime picnic or backyard party.

Be The Match’s JJ Barten, a Registered Dietitian, offers these tips to help decrease your risk of getting a foodborne illness:

  • On hot summer days above 90° F, prepared foods should not be left out for longer than 1 hour. Getting foods back into the refrigerator or freezer within 2 hours is recommended when the temperature is under 90° F.
  • When you’re getting the grill ready to use, make sure raw meats stay below 40° F until they are ready to be cooked.
  • Use a meat thermometer to make sure that beef, pork and fish are cooked to 145° F, ground meats to 160° F, and chicken and turkey to 165° F.
  • Avoid cross contamination when packing a cooler by using different containers to keep raw meats, poultry and fish separate from all other foods.

JJ says that careful planning is a good way to stay safe. For example:

  • Be one of the first people to eat. This helps make sure the food is at a safe temperature and there is less risk of cross contamination.
  • Bring your own food to events. Then you can be sure food was prepared safely.
  • Bring an alcohol-based hand sanitizer with you if you’re not sure there will be a place to wash your hands with soap and water before eating.

And finally, JJ suggests that if there is any question on whether a food item or a beverage is safe, throw it out.

For more information about summertime food safety, visit FoodSafety.gov.

Other summertime hazards to avoid

There are other outdoor risks in the summer, too. Dust and dirt from building sites, fields, gardens, and lawns can increase your exposure to harmful molds.

“Regarding dust and dirt, it’s best to avoid it in the first place,” says Dr. Burns. “Stay away from construction sites and farm lands, and ask your doctors when it’s safe for you to mow grass or work in the garden or flower beds.”

Swimming in pools or lakes could also be risky, because these may be contaminated with harmful bacteria such as Cryptosporidium, and E. coli. Dr. Burns says it’s best to avoid swimming in pools or lakes until your doctors gives you the go-ahead.

Finally, Dr. Burns recommends taking simple, common sense precautions and being aware of your surroundings. “Carrying a broad-brimmed hat, ample sunscreen, a face mask, and water with you during your daily activities can help keep you prepared for the unexpected.”

Questions to ask your doctor:

  • When is it safe for me to work in the yard or garden? To go swimming?
  • Are there any special precautions I should take if I’m going to the beach, pool, farm or woods this summer?

Want to learn more about safe eating and good nutrition after transplant? Register now for the free Living Now telephone workshop on nutrition 1+ years after transplant.

Date: Wednesday, June 13, 2018

Time: 12:00 p.m. to 1:00 p.m. Central

To register:

Visit: BeTheMatch.org/patient-workshops

Email: patientinfo@nmdp.org

Call: 1(888) 999-6743

A donor-recipient meeting helps raise awareness among D.C. lawmakers

Posted April 3rd, 2018 by Be The Match and filed in Donor Stories, Patient Stories, Volunteer Stories
Show Content

On March 20, in Washington, D.C., a first-time meeting between a marrow transplant recipient and her donor brought about tears of joy and forged a life-long connection between two women. But the meeting also raised awareness about how Congressional support is vital to help future patients get the marrow or cord blood transplants they need.

Be The Match arranged the first-time meeting between transplant recipient Kate Jauch and her donor, Kyndess Eaggleston, who was identified as the best match for Kate from among the more than 19 million volunteer donors listed on the Be The Match Registry.

The day after their emotional meeting, both women shared their experiences with Members of Congress at several legislative briefings arranged by Be The Match. Kyndess and Kate each spoke about the importance of advocacy, program funding, and access to transplant for Americans with blood cancer and other blood disorders.

“I was fortunate to have found a match, and we must continue to grow the registry for those who will need a transplant in the future,” said Kate. “This is why we are urging policymakers to protect access to transplant through increased program funding.”

At the briefings, both women spoke to Members of Congress and their legislative aides about how increased funding is needed to optimize access to marrow transplantation and to improve outcomes, particularly for Americans who might have difficulty finding a match or for patients where a transplant is their only chance for a cure.

“It was very moving to meet Kate in person and know that this is someone I will forever be bonded to through the Be The Match Registry,” said Kyndess. “I encourage anybody eligible to sign up to be a donor. They make the process easy and knowing you could potentially save a life is incredible.”

How you can advocate to help patients who need transplants

The first-time meeting between Kyndess and Kate raised awareness among the many Member of Congress who attended the briefings that for Medicare beneficiaries, funding for bone marrow transplants fall short of the actual costs of care.

Advocates such as Kyndess and Kate are urging Congress to act swiftly to pass HR 4215, legislation to ensure that future Medicare payment for cellular transplant reflects the true costs of treatment, including cell acquisition, transplant and recovery for older Americans diagnosed with blood cancers or other disorders.

As described on the Be The Match legislative advocacy webpage, HR 4215 will reform reimbursement to hospitals for the cell acquisition costs using a methodology similar to that used for solid organs. This policy would have a very small impact on Medicare’s total spending, but would ensure patient access to life-saving care.

Learn more about how you can advocate on this and other issues affecting access to live-saving transplants.

BMT Journeys: An invitation to transplant recipients and their caregivers to write about and share their experience

Show Content

Medicine may heal the body, but art and writing can heal the soul. Reflective writing and creating art about your experience with cancer may help you cope with your recovery. For many people, writing and art provides a way to express deep thoughts and feelings about an experience, or make meaning out of an experience.

Reflective writing can help you and others

For Ted, a blood and marrow transplant (BMT) recipient, he decided to write about his transplant experience for personal reasons. “I had come to a point in my life where the memories of and lessons learned from my struggle began to fade. I did not want them to. Revisiting those days and subsequently writing about them seems to be the best way to “re-ground” myself,” says Ted.

But did you know what you write and create can also help future patients and caregivers? Wendy, a transplant recipient, blogged throughout her experience. She says, “To this day, I meet people who tell me how much my honesty through my journey helped them with what they were going through. I did it for me, but it helped others.”

Share your original work of written or visual art

The Be The Match® Patient Support Center invites all BMT recipients, caregivers and parent caregivers to submit an original work of written or visual art inspired by their transplant experience. This may include a story or poem in English or Spanish that is up to 1,000 words, a painting, drawing or photograph. Be The Match will publish a free print and online book of submissions near the end of 2018.

You can participate if you’re a:

  • Recipient of any type of BMT, including allogeneic (unrelated or related donor), autologous, haploidentical, stem cell, umbilical cord blood.
  • Caregiver or parent caregiver of someone who has had any type of BMT.

People younger than 18 years old must have parent or guardian permission.

Visit BeTheMatch.org/BMTJourneys to learn more and share your story.

Writing can stir up emotions

It’s not uncommon to feel sad or down when you reflect on and write about your experience. “I was hesitant to cast myself back into the darkest days of my life,” says Ted. But it can bring good feelings, too. Ted notes that he “also wanted to relive the hope, the joy, and the love” from that time as well. The Be The Match Patient Support Center staff can support you and help you cope with the feelings that may be stirred up as you reflect on your transplant journey.

Call: 1 (888) 999 – 6743

Email: patientinfo@nmdp.org

Visit: BeTheMatch.org/one-on-one

Little Emilie!

Posted January 16th, 2018 by Be The Match and filed in Patient Stories
Show Content

Little Emilie!

At 9 months old, Emilie Meza was diagnosed with acute myeloid leukemia and her family was told that her best hope for a cure would be a marrow transplant. She is now 1 year old, and has not found a match on Be The Match Registry®. After searching for a marrow match, her doctors and family made the tough decision for her to receive a haploidentical marrow transplant from her father, Eduardo Meza. A haploidentical transplant comes with extra precautions, as this means he was a half-match to Emilie, not a full match. While recent outcomes of haploidentical transplant are promising, many marrow transplant doctors prefer a fully matched adult marrow donor over a haploidentical marrow donor. But this was the best option available for Emilie.

Emilie’s family continues to encourage others to join the registry and support Be The Match® so that other families don’t need to make the tough decisions they have regarding alternative treatment options. Emilie received her marrow transplant from her father, and is now continuing to recover with her family and doctors by her side. You can get frequent updates on her recovery from their facebook page, Emily Meza’s Bone Marrow Transplant Journey.

Please consider signing up for a monthly financial gift to help patients like Emilie find a fully matched donor on Be The Match Registry. Your financial support helps add more potential marrow donors to the registry, fund advancements in marrow transplant science and provide relief to patients and families facing financial barriers to treatment.

Give today!

 

Protect access to transplant for patients like Mark

Posted December 4th, 2017 by Be The Match and filed in Patient Stories
Show Content

Mark, transplant recipient, with his wife

In 2008, after feeling tired constantly and experiencing night sweats, Mark knew these symptoms were a red flag and visited his doctor. Blood tests revealed his counts were dramatically low – which indicated lymphoma. Additional tests revealed that Mark had mantle cell lymphoma, a very rare form of lymphoma that is classified as incurable. A bone marrow transplant would be Mark’s best hope of keeping his disease in remission.

Mark started six rounds of chemotherapy to go into remission while his doctors at the University of Michigan searched the Be The Match Registry® to find him a match. He had five perfect matches. Mark’s second perfect match stepped up to be his life-saving donor. Throughout his transplant journey, Mark said he felt fortunate to be able to focus on recovery and healing instead of worrying about his insurance coverage.

The cost of transplant can be up to $200,000. And most often, transplant centers are only reimbursed approximately $65,000 to treat Medicare patients. This creates an access barrier for patients to receive the life-saving treatment they need.

“Lymphoma can come back,” he said. “I visit patients who are in their 70’s and getting transplants. I have seen the bills without insurance – without Medicare coverage, people could not do it.”

Please urge your Members of Congress to co-sponsor this upcoming legislation. Medicare beneficiaries like Mark and the patients he volunteers with need your help: be the voice to save a life.

Feeling thankful during a difficult transplant recovery

Posted November 6th, 2017 by Be The Match and filed in Patient Stories
Show Content

It’s not unusual for people to feel thankful to be alive after overcoming a life-threatening illness. But being thankful after a blood or marrow transplant (BMT) can be difficult if you are also coping

David, transplant recipient, with his sister and parents

with negative physical, emotional and financial issues after a transplant.

Read on to get expert advice from a BMT Social Worker on how you and your loved ones can feel more thankful even in difficult times.

The following are excerpts from an interview with Olivia Eusden, MSW, LICSW, BMT Social Worker, Patient Support Center, Be The Match®.

Is thankfulness possible for people who have serious complications or challenges after BMT?

Olivia: Feeling grateful can seem nearly impossible when you have serious complications or challenges after BMT. Thankfulness is possible, it just may look different from before. For protective reasons, we often resist the pain caused by serious life challenges. But, if we surrender to the pain, it’s possible to feel hope that things will get better someday – and if not better, easier.

Recognizing even small feelings of hopefulness can allow you to move out of the victim space and into the “survivor” role. As a survivor, you might find that you take nothing for granted. You also might find that BMT gave you more perspective, brought you closer to others, afforded you more patience, or made you more empathetic. Perhaps you’re more resilient and open to new experiences than you once were. All of these changes you notice about yourself after transplant are reasons for gratitude.

 

What are some ways people can cope with ongoing challenges after BMT?

Olivia: Ongoing challenges after BMT can feel defeating. You might feel isolated in your grief and pain. It’s important to remember that you aren’t going through this alone.

If it feels like others in your support system “don’t get it,” try connecting to a community of people who share your experiences. Find a support group through your transplant center, or register for Be The Match Survivorship Chats.

Support groups are safe spaces to share your fears and frustrations without feeling judged or misunderstood. It can also be a place for you and other patients to share what you’ve learned, suggest creative solutions to common problems, and provide emotional support. Participants in a support group may understand what you’re experiencing in ways that other people might not.

 

What advice do you have for someone struggling to feel thankful after BMT?

Olivia: If you’re struggling to feel thankful after BMT, try to redefine “gratitude.” At another time in your life, showing gratitude might have felt important in situations such as receiving birthday presents, or when someone cooked you a meal.

Now, in more challenging times, appreciation and gratitude happens on an entirely different level. Gratitude might look like thankfulness for breath and vitality, or an appreciation for waking up in the morning and going to bed at night.

Some patients share that instead of wishing their experience with BMT away, they learned to take illness/recovery as an opportunity to slow down, regroup, and listen to what was going on for them personally. In that sense, illness became a tool for personal growth and discovery that may not have occurred otherwise.

 

What advice do you have for someone feeling pressured to express thankfulness after BMT?

Olivia: With Thanksgiving in view, the cultural nod to thankfulness is blatant. If you receive or feel pressure around the holidays to express thankfulness, recognize that you may not be in a place where gratitude feels possible right now.

Gratitude is personal and will vary from person to person based on past experiences, personality and circumstances. Give yourself permission, or ask for permission from a close family member or friend, to feel less-than-grateful at this time.

No matter where you are in your survivorship, if you’re feeling like your thankfulness is lackluster, it can be meaningful to spend just one moment each day listening to what your body is telling you without judgment. Notice something you weren’t aware of before, and explore the possibility of carving out a tiny space for gratitude just for having this daily ritual.

One day, you will be able to find a bit of gratitude and it may make all the difference.

___________________________________________________________

The Be The Match Patient Support Center provides support, information and resources for transplant patients, caregivers and families.

Contact us using the information below to register for a Survivorship Chat, talk to another BMT recipient or caregiver through the Peer Connect program, or get one-on-one telephone counseling support from a licensed clinical social worker. All services are free.

 

Joining a clinical trial after your transplant: How it may help you and others

Posted November 6th, 2017 by Be The Match and filed in Patient Stories
Show Content

Before your transplant, you may have been asked to join a clinical trial, also known as a research study. A clinical trial is a way for doctors to gather information about how well a specific treatment might work, such as a new way to prepare patients for a blood or marrow transplant (BMT).

But there are also many research studies you can join after BMT, including studies testing new treatments for BMT complications like graft-versus-host disease (GVHD). In other cases, there are clinical trials testing whether new drugs can help BMT recipients recover faster.

That was the case with Adam, who had a BMT to treat acute myeloid leukemia (AML). He decided to join a clinical trial testing a new drug. “It’s a study to see if this drug taken as a maintenance drug after BMT does anything to help patients do better,” he says.

Clinical trials can help improve outcomes (results) for patients. They can also help doctors make important discoveries that may help future patients. For Adam, both factors were important to him when he was deciding whether or not to join the research study.

“To be honest, I asked what the benefits were for me,” he says. His doctor didn’t know if it would help him. But as Adam thought more about it, he began to think less about the benefit for himself and more about how the research could be useful for others. “The benefits are for future use of the drug, and future patients,” he says. “That was my motivation.”

There can be both risks and benefits to patients joining research studies, says Scott Kerwin, MN, RN, Clinical Trial Patient Education Specialist at Be The Match. “Joining a clinical trial is a very personal choice,” he says.

Most of the newest treatments are only available to patients through clinical trials, according to Scott. They may be very appealing to patients who haven’t gotten better with standard treatments and have few other options, he says.

Another benefit, Scott notes, is that often a patient’s health will be more closely monitored due to the extra visits, procedures, scans and data collection as part of the clinical trial. For Adam, he was concerned about those extra appointments at first. He says, “I’m given enough pills for 1 month. I thought getting back to the clinic each month for pills would be an issue. But it hasn’t been difficult. I’m in the 11th month now.”

Some risks include receiving drugs or other therapies that are unproven or have never been tested. According to Scott, there is always a chance that a new treatment may have dangerous side effects. This was also true for Adam. “I had a lot of fatigue. That made me want to reconsider. They took me off the pills for a couple weeks. I immediately felt better, then went back on,” he says.

Scott recommends that you ask the clinical trial doctors questions before you decide whether to join, such as:

  • What is the new treatment being tested in this trial and why do you think this could benefit me?
  • What are the risks in this trial? Do you know what the side effects may be? Have other people who have been in this trial had any problems?
  • Will I need to stay in the hospital longer? How long will the trial last?
  • Will my insurance cover the costs of the trial? If not, will the clinical trial pay for the costs?

If you think you might want to join a clinical trial, Be The Match can help you find one that is a good fit for you. The Jason Carter Clinical Trials Program was created for patients and their families, to make it easier to find and join clinical trials. The free program provides:

  • One-on-one support from a clinical trials specialist for patients and families. If you’d like help finding a clinical trial, call Scott at 1 (888) 814-8610 or e-mail clinicaltrials@jcctp.org. He can answer your questions and help you find a trial.
  • An easy-to-use web-based search tool to find relevant clinical trials related to blood cancers, blood disorders and BMT complications, like GVHD
  • Educational resources for patients and families to help them learn about clinical trials

If you’re concerned about the cost of traveling to join a clinical trial, talk to your health care team to find out if you qualify for financial assistance from the Drs. Jeffrey and Isabel Chell Clinical Trials Travel Grant. Eligibility information and the application are available at www.jcctp.org.

For his part, Adam says he is glad he decided to join the clinical trial, and that he continued with it despite having some side effects from the drug. He decided to continue, he says, because doing so might help future patients. “Basically, if we want to advance science, then the more the doctors can learn, the better.”