Don’t stop asking your care team about options for treatment, clinical trials, and other help. Over time, the answers to your questions could change as new options are discovered and made available. There is HOPE.
Intended for US residents only
Intended for US residents only
More than one year after stem cell transplant: What to keep in mind
Even more than a year after their treatment, many stem cell transplant survivors are still in recovery mode. While some people may feel like their hardest days are behind them at this point, you’re not alone if you’re still facing challenges. Both of these experiences are “normal,” since there’s no one way or timeframe in which all patients recover from stem cell transplant. It’s different for everyone.
A stem cell transplant can be lifesaving and the beginning of a new life journey. But many people deal with late or long-term effects that can be difficult, both physically and emotionally. Approximately 30% to 70% of patients receiving cells from a donor will develop chronic GVHD. While the vast majority of cases appear within the first year after transplant, 5% to 10% of patients develop it later. And treatment may continue for a number of years before it goes away.
The good news is that GVHD is a robust area of research these days. Scientists are learning more and more about what’s happening in the body when GVHD occurs. That, in turn, is helping them find new and better ways to help prevent and manage it. You may even want to talk to your transplant team about new options or participating in a clinical trial.
Studies are also bringing new types of support services to transplant centers that help preserve and improve quality of life for transplant survivors and their families. It can be a long road, but there’s help the whole way for everyone who needs it.
What patients can do now
Continue to be vigilant about your care
Even though you may have less frequent healthcare visits than you did right after transplant, it’s important to stay connected to your transplant team. Be sure to report any new or changing signs and symptoms of GVHD as well as any that aren’t responding well to your current treatment plan.
Your care team relies on you and your caregiver to let them know how you’re doing along the way, so they can make recommendations and adjustments accordingly. Keep talking to them and asking questions! If you continue to deal with problematic symptoms of GVHD, ask your team what other options are available.
Talk with people who understand what you’re dealing with
Recovery after stem cell transplant can be a long road, especially if you’re managing complications like GVHD. Don’t go it alone. Various advocacy organizations offer peer connect programs that can match you with other transplant survivors to talk or email with. Or explore Facebook and other groups that let you converse online with other survivors who “get it.”
Share your GVHD story
Many patients find that sharing their experiences and personal insights about their transplant journey and GVHD is helpful for both themselves and others. Nothing inspires like hearing from people who’ve “been there.”
If you’d be willing to share your transplant story and helpful advice about living with GVHD, sign up for our GVHDspeaks program.
Talk with people who understand what you’re dealing with
Recovery after stem cell transplant can be a long road, especially if you’re managing complications like GHVD. Don’t go it alone. Various advocacy organizations offer peer connect programs that can match you with other transplant survivors to talk or email with. Or explore Facebook and other groups that let you converse online with other survivors who “get it.”
— Diane Randolph, Oncology Clinical Nurse Educator, Incyte Corporation
What caregivers can do now
Find support for the journey forward
Like patients, caregivers can also experience a long and sometimes difficult period of recovery after stem cell transplant. Find ways to connect with other caregivers who’ve walked in your shoes, or reach out to support groups that may help make your own journey forward easier.
Be a mentor to other caregivers
It can be extremely rewarding to help others stepping into the caregiver role by sharing your experience and know-how. Many advocacy organizations invite transplant patients and caregivers to serve as peer mentors, usually by matching you with someone and arranging occasional phone calls.
Share your experience and tips for helping to manage GVHD
Our GVHDspeaks program gives you an opportunity to:
- Share your story about caring for a loved one who’s experienced a stem cell transplant and GVHD
- Offer tips, advice, and encouragement to help others in this role
- Provide feedback or ideas for additional information or resources that would be helpful for others managing life with GVHD
Learn more and sign up for GVHDspeaks.
Be a mentor to other caregivers
It can be extremely rewarding to help others stepping into the caregiver role by sharing your experience and know-how. Many advocacy organizations invite transplant patients and caregivers to serve as peer mentors, usually by matching you with someone and arranging occasional phone calls.