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Living Beyond cGVHD

Insights into Bone Marrow Transplants and Understanding cGVHD

Bone marrow transplant

The period after transplant is "vigilant“ as your body is susceptible to multiple infections.2

 

Long-term follow-ups are needed for those undergoing bone marrow transplants.2,3
Did you know that...
A multi-disciplinary team will take care of you, including pulmonologists, cardiologists, ophthalmologists, and orthopedic doctors.2

What are the essential steps to safeguard your health after bone marrow transplant?3

Use masks and proper hand hygiene for 6 months after transplant and immunosuppression.3,4
Use a separate room and bathroom for 6 months to avoid exposure to infections from visitors.3,5
Avoid contact with people who have fever, cough, flu, and other contagious infections.3
Cook your food thoroughly and avoid unfiltered water.3

What is GVHD?

Graft-vs.–host disease occurs when the immune cells of the tissue you receive (graft) recognize your body (host) as foreign and launch an attack resulting in many symptoms.6,7

cGVHD: Chronic graft-vs.–host disease; GVHD: Graft-vs.-host disease.

How many bone transplant patients are affected by GVHD?

Did you know that...Even when the matched donor is a sibling, 1 in 2 bone marrow transplant patients can get affected by acute GVHD, and the occurrence is higher in unmatched donors.6

Which factors increase the risk of developing cGVHD?

What are the basics of cGVHD occurrence?



GVHD is a post-transplant complication where donor immune cells attack the recipient's tissues, involving various
cytokines and immune cells.6



cGVHD typically develops 100 days after a transplant, with
symptoms such as fever and skin rashes.6,7
 

cGVHD: Chronic graft-vs.–host disease; GVHD: Graft-vs.-host disease;

Factors determining the occurrence and severity of GVHD

Increased severity of GVHD6
Donor–host factors such as unmatched transplants and specific protein mismatch
High-dose chemotherapy
Full-body radiation
Reduced severity of GVHD6
Use of frozen bone marrow or blood from the umbilical cord
Triple-drug therapy using cyclosporine, methotrexate, and prednisone is more effective than double therapy with cyclosporine and methotrexate.

Living With cGVHD

What is it like to live with cGVHD?9

What are the further complications associated with cGVHD?10

Did you know the signs and symptoms of cGVHD?11

It is important to let your doctor know of any of these symptoms immediately. Please refer to the checklist at the back of the booklet for help.

Enhancing Quality of Life and Wellness

Managing cGVHD

Here are some treatment options available for GVHD.

After the transplant, you will be given preventive (prophylactic) medications to suppress your immune system. This will prevent the donor immune cells from launching an attack against your tissues.6

Corticosteroids are the most commonly prescribed drugs after a bone marrow transplant.6
 

Precautions to be taken to prevent cGVHD

cGVHD can be prevented by protecting yourself from acute GVHD. Here are some preventive measures:6

cGVHD: Chronic graft-vs.–host disease; GVHD: Graft-vs.-host disease.

Treatment for GVHD depends on the type of disease—acute or chronic.12

Acute GVHD is treated with increasing doses of medications that suppress your immune system from being too active, usually corticosteroids.13

The treatment also varies depending on the affected
organ. 12,13

 

cGVHD is managed using treatments that suppress the immune system for a long time. Other treatments that your doctor may recommend include ruxolitinib, belumosudil, ibrutinib, and photopheresis.13

Managing emotional health

It is important to seek professional support to help deal with the impacts of cGVHD.13

Social workers
Psychiatrists
Psychologists
Join support groups where you can discuss and support others who are going through the same journey as you.14
Caregivers should also join support groups to better understand how they can help.14
 
Maintaining a good lifestyle via exercise, yoga, and meditation can help you cope with GVHD.14

Increase strength and stamina

Improve the quality of sleep

Reduce fatigue and anxiety

cGVHD: Chronic graft-vs.–host disease; GVHD: Graft-vs.-host disease.

Thriving With cGVHD: Embracing Care, Adherence, and Support

You can support your doctor in the long-term monitoring of GVHD by adhering to these tests and check-ups at regular intervals before and after a bone marrow transplant.15

cGVHD: Chronic graft-vs.–host disease; GVHD: Graft-vs.-host disease; MRI: Magnetic Resonance Imaging; TSH: Thyroid Stimulating Hormone; T4: Thyroxine.

Navigating Everyday Challenges: Living with cGVHD

Quick tips for day-to-day life with cGVHD

While cGVHD can be a long fight, it need not be challenging with the right support.16

Seek counseling and help from your family and friends to help in your recovery.17
Creams and lotions prescribed by your doctor will help you overcome skin issues.17
Light-intensity exercises will help you overcome physical difficulties and improve your range of movement.17
Your doctor and nurse can help you find assistance in managing your finances, work, and childcare issues during the diagnosis.17

Adherence to medication

cGVHD: Chronic graft-vs.–host disease.

Click here to download Patients Materials-English Click here to download Patients Materials-Arabic

  1. National Cancer Institute. Available at: https://www.cancer.gov/about-cancer/treatment/types/stem-cell-transplant. Accessed on: 14 February 2024.
  2. Nascimento AA de A, Melo JCA de, Soares KD, et al. Self-care guidelines for patients in the post-hematopoietic stem cell transplantation period: A scoping review. Rev Bras Enferm. 2023;76(4):e20220383.
  3. Giaccone L, Felicetti F, Butera S, et al. Optimal delivery of follow-up care after allogeneic hematopoietic stem-cell transplant: Improving patient outcomes with a multidisciplinary approach. J Blood Med. 2020;11:141–162.
  4. Puius YA, Bartash RM, Zingman BS. Maintaining mask momentum in transplant recipients. Transpl Infect Dis. 2021;23(4):e13697.
  5. Tomblyn M, Chiller T, Einsele H, et al. Guidelines for preventing infectious complications among hematopoietic cell transplantation recipients: A global perspective. Biol Blood Marrow Transplant. 2010;16(2):294.
  6. Graft-Versus-Host Disease: StatPearls Publishing. Available at: https://www.ncbi.nlm.nih.gov/books/NBK538235/. Accessed on: 09 February 2024.
  7. Elmakki EE, Madkhali MA, Oraibi O, et al. Transfusion-associated graft-versus-host disease in adults. Cureus. 2023;15(8):e44148.
  8. Flowers MED, Inamoto Y, Carpenter PA, et al. Comparative analysis of risk factors for acute graft-versus-host disease and for chronic graft-versus-host disease according to National Institutes of Health consensus criteria. Blood. 2011;117(11):3214–3219.
  9. Cooke KR, Luznik L, Sarantopoulos S, et al. The biology of chronic graft-versus-host disease: A Task Force Report from the National Institutes of Health Consensus Development Project on Criteria for Clinical Trials in Chronic Graft-versus-Host Disease. Biol Blood Marrow Transplant. 2017;23(2):211–234.
  10. Ghimire S, Weber D, Mavin E, et al. Pathophysiology of GvHD and other HSCT-related major complications. Front Immunol. 2017;8:79.
  11. Jagasia MH, Greinix HT, Arora M et al. National Institutes of Health Consensus Development Project on Criteria for Clinical Trials in Chronic Graft-versus-Host Disease: I. The 2014 Diagnosis and Staging Working Group report. Biol Blood Marrow Transplant. 2015 Mar;21(3):389–401.e1.
  12. Graft vs. Host Disease. Available at: https://my.clevelandclinic.org/health/diseases/10255-graft-vs-host-disease-an-overview-in-bone-marrow-transplant. Accessed on: 14 February 2024.
  13. Treatment for acute GvHD. Available at: https://www.cancerresearchuk.org/about-cancer/coping/physically/gvhd/treatment/acute-gvhd. Accessed on: 14 February 2024.
  14. Coping with the Stress of Graft-versus-Host Disease. Available at: https://bmtinfonet.org/transplant-article/coping-stress-graft-versus-host-disease. Accessed on: 14 February 2024.
  15. Malard F, Holler E, Sandmaier BM, et al. Acute graft-versus-host disease. Nat Rev Dis Primers. 2023;9(1):27.
  16. Coping with chronic GvHD. Available at: https://www.cancerresearchuk.org/about-cancer/coping/physically/gvhd/coping-chronic. Accessed on: 14 February 2024.
  17. Jamani K, Onstad LE, Bar M, et al. Quality of life of caregivers of hematopoietic cell transplant recipients. Biol Blood Marrow Transplant. 2018;24(11):2271–2276.
  18. Patient Discussion Guide. Available at: https://www.gvhdalliance.org/resources/. Accessed on: 14 February 2024.
  19. Basics of Graft-Versus-Host Disease. Available at: https://bethematchclinical.org/workarea/downloadasset.aspx?id=17446. Accessed on: 14 February 2024.
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