BMT Survivorship: Patient Education

As you have completed your initial cancer treatment and BMT, you might be wondering: what happens next?

The answer is different for every person. Some people return to the lives they were leading before their diagnosis, while the lives of others are significantly changed by their cancer experience, the development of graft-versus-host-disease, or other issues and challenges. However, the challenge for every BMT survivor is figuring out how to return to everyday life while adjusting to the effects of their illness and its treatments.

Understanding and recognizing the challenges that face BMT survivors can help you through this time of transition. Understanding and recognizing these challenges are the first steps in developing strategies to adapt to the changes affecting your life after BMT. The goals of the MGH Bone Marrow Transplant Program Survivorship Program are:

1. To help you prepare for life after BMT
2. Discuss and normalize common challenges facing BMT survivors
3. Provide helpful strategies to overcome these challenges
4. Provide helpful strategies to enhance patients’ self-care

Challenges affecting BMT survivors

There are many challenges that can affect BMT survivors including:

• Fatigue
• Pain
• Chemo-brain and neurocognitive side effects
• Sleep problems
• Discomfort with changes in physical appearance and self-image
• Emotional difficulties including depression and anxiety and fear of disease recurrence
• Endocrine and hormonal issues after transplant including bone health and thyroid
• Changes within families and relationship
• Going back to work
• Intimacy and sexuality
• Long-term follow up and prevention of cancer
• How to best care for one self in terms of nutrition, exercise and hygiene
• Fear of germs after BMT
• Dealing with chronic graft-versus host disease (chronic GVHD)

Many of these challenges face all cancer survivors, but some of them are very specific to BMT survivors (such as fear of germs after BMT and dealing with chronic GVHD).

Chronic graft-versus host disease (chronic GVHD)

Chronic GVHD is a condition when the immune system can attack the body. This condition can affect any organ in the body and we will be discussing chronic GVHD in detail in one of our sessions. But the common challenges that patients face when they have chronic GVHD include:

• Mouth pain and sensitivity to food
• Eye dryness and eye pain
• Skin problems and rashes
• Joint pains and limitations to their range of motion
• Shortness of breath and limitations in level of activity
• Infections
• Muscle weakness and dealing with side effects of prednisone
• Emotional challenges of living with chronic GVHD

A time of change

Many BMT survivors describe the first year after BMT as a time of change. It is not so much “getting back to normal” as it is finding out what’s normal for you now. BMT survivors often also say that life has new meaning and they look at things differently now. This new meaning and perspective on life often make individuals stronger and allow them a chance to reflect on what’s really important to them.

Our goal with the MGH BMT Survivorship Program is to cover all of these challenges and help you develop strategies to overcome these challenges in your daily life. Some of these challenges might not apply to you, but the strategies that we will discuss can help you in thinking about how to face the journey of survivorship after BMT.

Download Our Helpful Handouts

• Welcome Letter
• Tips for Managing Fatigue
• Tips for Managing Memory Changes
• Tips for Managing Peripheral Neuropathy
• All You Need to Know About Chronic Graft-Versus Host Disease
• Body Image Concerns
• Communication and Relationships
• Mindfulness and Gratitude
• Fear of Recurrence
• Self-Care
• Personal Reflection
• Financial Stress
• PACT: Parenting at a Challenging Time
• Palliative Care
• Sexuality and Intimacy
• Maintain Your Sexual Health: Men
• Maintain Your Sexual Health: Women

Trusted Patient Resources You May Be Interested In

Mass General Resources:

• Mass General Bone Marrow Transplant Program

  Our Bone Marrow Transplant program is committed to developing leading-edge strategies for autologous and allogeneic bone marrow and peripheral blood stem cell transplantation for a wide variety of hematologic malignancies, solid tumors and other life-threatening hematologic disorders.

• Mass General Cancer Center Survivorship Program

  Our goal is to promote the health and well-being of patients with cancer following completion of initial therapy.

• Maxwell V. Blum Cancer Resource Program

  The Maxwell V. Blum Cancer Resource Program offers a range of support resources around the Mass General Cancer Center. The program has an ongoing mission to make support services, as well as respite and community-building areas, more accessible to patients and families throughout the Cancer Center.

• Benson-Henry Institute for Mind Body Medicine
  

  The Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital is dedicated to research, teaching and clinical application of Mind Body Medicine and its integration into all areas of health.

• Mass General Social Work
  

  Social workers are available to Mass General inpatients and outpatients through walk-in services, scheduled appointments, or by request. Tel: 617-726-2643

• Psychiatric Oncology
  

  The Center for Psychiatric Oncology and Behavioral Sciences brings together experts in psychiatry and psychology to help patients and cope with the psychological and behavioral impact of cancer. Tel: 877-789-6100.

• Parenting Support/PACT
  

  The clinical team of the Marjorie E. Korff PACT Program is committed to providing professional and compassionate care to families who are facing the challenges of a parent’s serious illness. Tel: 617-724-7272

• Integrative Therapies
  

  Mass General's Cancer Center's support programs are designed to help patients, their families and caregivers cope with the challenges of a cancer diagnosis. We offer a wide range of integrative therapies, workshops and support groups. Tel: 617-724-6737

• Lifestyle Medicine
  

  Mass General's Cancer Center's Lifestyle Medicine Program provides personalized one-on-one consultations for any patient with cancer or a history of cancer who wants to improve their physical fitness, nutrition, quality of life or cancer prognosis. Tel: 617-724-4000

External Resources:

• BMT InfoNet
  

  Blood & Marrow Transplant Information Network (BMT InfoNet) is dedicated to providing transplant patients, survivors and their loved ones with emotional support and high quality, easy-to-understand information about bone marrow, peripheral blood stem cell and cord blood transplants.

• National Cancer Institute
  

  Cancer.gov is the central website for the National Cancer Institute, the U.S. government’s principal agency for cancer research.

• Look Good Feel Better
  

  Look Good Feel Better is dedicated to improving the quality of life and self-esteem of people undergoing cancer treatment.

• LIVESTRONG
  

  LIVESTRONG unites, inspires and empowers people affected by cancer, and provides free cancer support services to anyone fighting cancer today.

• National Bone Marrow Transplant Link
  

  The National Bone Marrow Transplant Link is dedicated to serving individuals before, during, and after a bone marrow or stem cell transplant.