Support for coping with nerve damage after transplant

Posted May 9th, 2017 by Be The Match and filed in News, Patient Stories
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May 7 – 13 is peripheral neuropathy awareness week. It’s not a common problem after transplant, but if you have it, you know it can affect your entire life – and not just physically.

Know the symptoms of peripheral neuropathy

Peripheral neuropathy is numbness and tingling in your fingers and toes. It can also cause pain, weakness, difficulty with writing, and problems with walking and balance. Even a light touch on the skin can be painful.

Everett, transplant recipient, with his doctor

Sometimes it can make your hands or feet more or less sensitive to temperature changes and pain. This may make it painful to step into the bath or shower. Or you may also be less aware of cuts or injuries to your feet. Find tips to stay safe and protect your hands and feet.

If you have any of these symptoms, talk to your transplant team. There are medicines to treat neuropathy and ease your symptoms.

Speak up!

“Advocate for yourself, and don’t minimize or play down your experience of pain or discomfort,” says Olivia Eusden, BMT Social Worker at Be The Match®. Olivia provides one-on-one counseling support over the phone to help patients and caregivers cope with transplant and recovery. She says “It’s important to listen to your body and track its changes.” If you struggle finding the right words to tell your doctor how you’re feeling, Olivia says, “Social workers at your clinic, or trusted family members and friends, can help you advocate for yourself.”

Get support

It’s also important to care for the emotional effects of peripheral neuropathy, says Olivia. She points out that when a chronic problem like peripheral neuropathy develops after transplant, it may be difficult for your loved ones to understand. “When people can’t understand something, they may be fearful and avoid talking about it. As a result, you may feel isolated and under-supported,” she says. If that happens, it’s important to take steps to break out of the isolation.

One way to get social support, says Olivia, is to help people help you. “Tell others how they can support you. Many people need direction when it comes to how to offer support. And, the support you need now may be different from support that others have given to you before or shortly after transplant.”

Olivia also suggests that you be gentle with yourself. “It takes time to adapt to peripheral neuropathy and figure out how to fit it into your life,” she says. “Take comfort in knowing that as with most new challenges in life, they start to make sense over time.” You can make sense of your life after transplant, including peripheral neuropathy, by reflecting on your transplant story. Olivia suggests, “Think about your experience with peripheral neuropathy and incorporate it into your new story. How we retell our stories shapes our personality, our future experiences, and old and new relationships.” Your story can empower you to move forward in your life after transplant.

Finally, Olivia suggests to “Practice self-care and spend time with positive people.” She notes that support from mental health professionals may also help you cope. “You can recover the support you need by seeing a licensed mental health professional,” she says. To receive free counseling support to help you cope with peripheral neuropathy or other challenges after transplant, call 1 (888) 999-6743 or email patientinfo@nmdp.org.

Connect with a peer

“Peer support is some of the best support for people coping with uncommon problems after transplant, like peripheral neuropathy,” says Olivia. Peer support can be in the form of a support group or one-on-one connections.

Support groups are safe spaces to share your fears and frustrations without feeling judged or misunderstood. People in a support group may understand life with peripheral neuropathy in ways that other people might not. There are groups that meet in person, online or by phone. Ask the social worker at your clinic for help finding a support group for you.

One-on-one support is another option. Our Peer Connect program can connect you with a trained volunteer who’s been there. Other recipients and caregivers, with experiences like yours, are available to talk by phone or email, sharing their experience and tips.

To request a connection, visit: BeTheMatch.org/patient-peerconnect

One woman’s experience with GVHD of the vagina and vulva

Posted March 6th, 2017 by Be The Match and filed in News, Patient Stories
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About 6 months after her transplant in 2014, Lola felt burning and discomfort near her vagina. She went to the doctor many times and over the course of 18 months she had treatment for a urethra blockage and low hormones from menopause. Finally, her doctors determined the cause was graft-versus-host disease (GVHD) of the vagina and vulva.

Symptoms of GVHD of the vagina and vulva

Chronic GVHD of the vulva and vagina happens when the donor cells attack these tissues. The vulva is the outer part of the vagina (birth canal). According to Pamela Stratton, MD from the National Institutes of Health, it’s important to notice changes in your genitals and tell your transplant team or gynecologist about those changes. “If you know it could happen and start feeling the burning sensation, then you might go to the gynecologist and get treatment,” says Lola.

Some of the common symptoms for vulvar and vaginal GVHD include:

  • Dryness
  • Pain with urination, while at rest or during vaginal sex
  • Redness or open sores in the vulva or vagina

Diagnosing GVHD of the vulva and vagina

"What is GVHD?" video from our Basics of Transplant series

“What is GVHD?” video from our Basics of Blood and Marrow Transplant series

“Chronic GVHD of the vulva is very common. It affects about 1 in 4 women after transplant. Vaginal chronic GVHD is less common. Since the vulva and vagina are different parts of your anatomy, treating one area of chronic GVHD doesn’t prevent or lower your risk of getting chronic GVHD in the other area,” Dr. Pamela Stratton says.

It’s important to diagnose chronic GVHD of the vulva and vagina early because early treatment can ease your symptoms faster. It also lowers the chances of it becoming a more serious problem. Doctors diagnose it with a gynecological exam. “They may take cultures and a tissue sample to diagnose chronic GVHD and rule out an infection or other problem,” says Dr. Stratton. For Lola, she felt relieved when she got the diagnosis. She no longer felt alone, but was encouraged to know what it was and learn how she could deal with it.

Management and treatment

Soon after Lola’s diagnosis, she started treatment with a topical steroid. Dilators or vaginal sex can also help keep the vagina from narrowing or closing. Currently, there is no known way to lower your risk of getting chronic GVHD of the vulva or vagina.

Each woman has different symptoms at different times, so it’s important for the gynecologist and transplant team to work together to offer the best treatment. “Treating specific genital GVHD changes is an important first step. Women also benefit from a multidisciplinary team approach to their reproductive health with members of the team including gynecology, urology, and sexual therapy specialists, as well as pharmacists. This team can help address effects associated with chronic GVHD including depression, stress, and menopausal changes,” Dr. Stratton says. Lola agrees, “It can cause depression. Talk to your health care team. You’re not complaining, but people don’t know you’re having a problem unless you tell them.”

Your quality of life is important, and that includes your sexual relationships. Lola encourages other women going through this to not be shy. “Modesty is difficult for a lot of people to overcome. So stand in front of a mirror and say the words ‘vagina’ and ‘vulva’ a lot until it becomes normal. Your vagina is a part of your anatomy like your elbow except it’s not out in public. And all women have one.” Talk openly with your health care team and sexual partner about how you feel. This is important for your health, your quality of life and your recovery.

For more information

  • Contact the Be The Match Patient Support Center. Receive free counseling support from a licensed BMT social worker to help you and your family cope with GVHD. Call 1 (888) 999-6743 or email patientinfo@nmdp.org.
  • Download Fast Facts: Chronic GVHD of the Vulva and Vagina. The fact sheet offers information on how to ease symptoms, how it can be treated, and when to call your doctor. It was developed by Be The Match and the Chronic Graft-versus-Host Disease Consortium.

A Family’s Promise Leads to Life-Saving Research Program

Posted February 2nd, 2015 by Be The Match and filed in News, Patient Stories
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The Amy Research Program began in 1998 with a family’s promise to Amy – a mother, a wife, a daughter. Since then, it has evolved into a partnership that has supported 25 scholars and 13 post-doctoral fellows in their research on improving transplant outcomes. The goal of their research is to discover ways to treat and prevent the potentially life-threatening complications some patients face after transplant.

Photo of Amy Strelzer ManasevitAmy’s story

Amy Strelzer Manasevit was a vibrant young mother who was diagnosed with multiple myeloma in 1993. A marrow transplant was her only hope for a cure. The search for a matching unrelated donor was long and complicated, but Amy and her family never gave up hope. Finally, a suitable donor was found, and Amy received her transplant. Unfortunately, even though the procedure was successful, it severely depleted her immune system and left her vulnerable to infection. Amy developed pneumonia and passed away six weeks after returning home.

Prior to her death, Amy turned to her father, Marty, and asked him to help others avoid her difficult struggle. He promised. In 1997, Marty, Amy’s husband Bruce, and their friends collaborated with us to establish the Amy Strelzer Manasevit Research Program for the Study of Post-Transplant Complications.

The Amy Research Program

The Amy Strelzer Manasevit Research Program bestows one of the largest and most coveted research grants in the field of marrow and cord blood transplantation. The program develops the next generation of physician-scientists by supporting and encouraging the discovery of new ways to treat and prevent post-transplant complications.

This crucial funding, distributed over three years, enables the young investigators to establish themselves as researchers and successfully compete for future grant opportunities. To date, through the Amy Research Program, Be The Match Foundation has supported 25 scholars. As a group, the Amy Scholars have been awarded $6.5 million and have leveraged their research funding to secure an additional $42 million.

What began as a promise has evolved into a program benefiting patients across the globe. Launched by family, supported by philanthropy, and furthered by research talent, the program is an exemplary model for people coming together to make a difference for patients in need.

2015 Scholar Announced

This February, two additional scholars will be awarded research scholarships:

  • Frank M. Cichocki, Ph.D., University of Minnesota
  • Joseph A. Pidala, M.D., Ph.D., H. Lee Moffitt Cancer Center and Research Institute