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Survivorship

After transplant, your road to successful long-term recovery relies on close follow-up care by your transplant team.  It is also important for you to understand the physical and emotional effects transplant may have on your body so you can live a healthy life after transplant.  The Utah Blood and Marrow Transplant Program incorporate the following programs and resources into your transplant experience, to ensure your best health and quality of life post-transplant.

Long-Term Follow-Up (LTFU) Program

Our purpose

A transplant offers a chance of cure for certain diseases or extends life for many patients who undergo this procedure. However, a stem cell transplant and its related treatment, such as chemotherapy and radiation, can negatively affect several organ systems. Side effects of transplant may last only for several weeks after transplant, however others may persist for years or a lifetime. Some side effects may present many years later in life.  The doctors of the Utah Blood and Marrow Transplant Program will work with you and other members of your health care team to identify, prevent, and manage these long-term complications. We also closely monitor for any recurrence of your cancer or the appearance of secondary cancers that can occur more frequently in transplant survivors. Lastly, we continuously communicate and coordinate care with your referring oncologist and/or primary care physician to maintain a seamless flow of care that is focused on providing the best health management to you.

Our services

  • Check the status of your disease for which you had the transplant
  • Discuss the side effects of your transplant
  • Screen for chronic GVHD (for allogeneic transplant patients) and refer to our Chronic GVHD Clinic as needed.
  • Manage post-transplant immunosuppressive medications, antibiotics, and other medications
  • Assess for long term effects on the heart, lungs, kidneys, gastrointestinal tract, bones, eyes, mouth, skin, endocrine system (thyroid, diabetes, sex hormones), nervous system, and emotional health
  • Recommendations for post-transplant vaccinations
  • Discussion of life-style behaviors, including sun protection, smoking cessation, nutrition/diet, and exercise
  • Development of treatment summary and survivorship care plans for you and your referring oncologist and/or PCP

Timeline

After your transplant and discharge from the hospital, you will receive direct care from your transplant physician in our post-transplant ambulatory treatment center (ATC). Patients who underwent an autologous transplant are normally discharged from the ATC to their referring doctor one month after transplant whereas allogeneic SCT patients are typically discharged after 3 months. Upon discharge you now become a patient of the LTFU program.

In addition to regular follow-up with your transplant physician, you will meet with a LTFU health care provider for an initial visit, then at 6 months, 12 months, and annually thereafter for evaluation, screening for late complications of stem cell transplant, and implementation of appropriate preventative interventions. For some patients, visits may be more frequent depending on the presence of active issues.  Regardless, our LTFU team is available to see you in person or speak by phone as frequently as you need. 

Research

Research is another important component of the LTFU program. We will monitor your post-transplant health and experience for our long-term follow-up research program. We will be collecting health information at your initial visit, 6, 12 months and annually thereafter to assess your health status. Questionnaires will also be sent at these time intervals to understand your quality of life, concerns and other issues surrounding long-term care after transplant. Your involvement helps us improve follow-up care for all of our transplant patients and helps us to understand how to improve transplant outcomes. We can also help you identify clinical trials investigating improved treatments for late effects of stem cell transplantation.

Resources to help you live well after your transplant

  1. Staying Healthy After Transplant
    https://bethematch.org/For-Patients-and-Families/Life-after-transplant/Staying-healthy/
  2. Long-Term Follow-Up Guidelines For Adults
    https://bethematch.org/For-Patients-and-Families/Life-after-transplant/Guidelines-for-long-term-care/

 

Chronic Graft vs Host Disease (cGVHD) Clinic

What it is

Chronic GVHD is a frequent long-term complication of transplant. Like acute GVHD, cGVHD is also an immune reaction against the transplant patient’s tissues, although the manifestations are very different between the acute and the chronic forms. Chronic GVHD affects multiple organs, but the most frequent manifestations are in the skin, mouth, eyes, and vagina. Our educational materials have a detailed explanation (LINK). You will discuss details of the disease with your physician or the cGVHD Clinic team.

Treatments we offer and research

We offer a variety of standard therapies, as well as more innovative clinical trials for cGVHD. In addition, we treat cGVHD with a multidisciplinary team that subspecializes in this very specific complication of transplant.

Extracorporeal Photopheresis (ECP) Unit

ECP is a form of light therapy, and the most frequently utilized treatment for cGVHD after corticosteroids. In addition, ECP is being increasingly used in the treatment of other diseases of the immune system. We have a state-of-the-art ECP Unit, with one of the most experienced teams in the country. We are also doing research on the best ways to harness the full potential of this therapy.


Supportive Oncology

A bone marrow transplant can positively affect your life but can also have toll on the body, mind, and spirit. Survivors may experience after-effects of transplant including pain, fatigue, anxiety/depression, concerns of body image, and low sexual drive. The Utah Blood and Marrow Transplant team recognize the impact of these issues on your health and quality of life, and we work closely with the Huntsman Cancer Institute Supportive Oncology and Survivorship (SOS) team to address and treat your concerns

Services provided

Pain and Symptom Management

  • Pain affecting nerves, bone, muscle, and soft tissues
  • Anxiety, depression, and distress
  • Fatigue, trouble sleeping, or nausea
  • Low sexual drive
  • “Chemobrain”

Psychosocial Support

  • Perceptions of body
  • Adjusting to life after transplant
  • Returning to Work

Spiritual Resources

  • Spiritual support

Wellness and Integrative Health Center

The Huntsman Cancer Institute Wellness and Integrative Health Center promotes physical and emotional well-being to our transplant patients and their loved ones at any stage of their treatment.  Below are some of the available programs and services.

 

  • Nutrition Counseling
  • Rehabilitation and Exercise Recovery
  • Yoga
  • Acupuncture
  • Massage
  • Music and Art Therapy
  • Creative Writing

 

My purpose here is to let you know how important a role you played in my diagnosis and treatment [of an infection post allogeneic transplant].  Your thoroughness, concern, attention to detail, astute clinical skills and timely follow up will stay with me forever. It is not often that a physician can look at one of their actions and credit themselves with giving a person several bonus years of life. I am sure that you know that your intervention led to my admission the following day, with positive cultures for norcardia and that my treatment was started.

I have relished my subsequent recovery enjoying myself immensely. I have been able to complete 3 papers for publication and return to a physical condition I have not enjoyed for decades. I know your research interests involve QoL . You have helped me to enjoy so many days where I am thrilled about what I have been able to accomplish with the reprieve you helped realize. QoL 10/10. Thank you for your care; it will always be a part of the highlights of my treatment program.

Dr. PK

 

 
 For more information, or to schedule an appointment, call 801-587-4652