You’ve passed your 1 year post- transplant milestone, and that’s something you may want to celebrate. But, it’s also important to keep having checkups with your health care team. During your checkups, your doctor will:
- Look for any signs and symptoms
- Talk with you about what tests and exams you may need
- Ask you about your quality of life, including your emotional health and sexual health
Common signs and symptoms that may be related to chronic GVHD
- Digestive system: Nausea, vomiting, diarrhea, loss of appetite, unexplained weight loss
- Energy level: Unusual tiredness (fatigue) or tiredness that gets worse
- Eyes: Dryness, itching, irritation, redness, change in vision
- Hair: Thinning
- Joints: Stiffness, swelling, inability to fully extend or flex fingers, wrists, elbows, ankles or knees
- Lungs: Shortness of breath, dry cough
- Mouth: Dryness, pain, sensitivity, difficulty swallowing, mouth or tongue sores
- Nails: Changes in texture, brittleness
- Skin: Rash, discoloration, tightness, thickening, texture changes
- Temperature: Any fever
- Vagina: Dryness, irritation or pain
If you have no signs or symptoms of GVHD, your doctor may slowly lower the dose and eventually stop your immunosuppressants (medicines that hold back your immune system). When that happens, it’s not unusual for new symptoms of GVHD to start. Tell your doctor right away if you have any new or worsening symptoms.
How are complications treated?
Depending on the problem, you may need to take 2–3 different treatments before finding what works best for you. Here are some tips to manage complications:
- Dryness, itching, irritation: Avoid eye strain and rest your eyes. Use preservative-free artificial tears, a humidifier or warm compresses.
- Severely dry eyes: Ask your doctor about specially made eye drops or contact lenses.
- Cataracts: For early or mild cataracts, try new glasses or better lighting. If your vision gets much worse, ask your doctor about cataract surgery.
Heart and blood vessels
- High cholesterol or high blood pressure: Eat a well-balanced diet with less fat. Do physical activity, like walking, most days. Take your medicines as prescribed by your doctor.
- Pain and dryness: Avoid eating spicy and acidic foods. Ask your doctor about rinses and lubricants, which may relieve mouth sores.
Skin, bones and joints
- Rashes: When going outside, wear hats and long sleeves to protect your skin. Check with your doctor before using any new skin creams or lotions.
- Skin and joint changes, such as tightening or thickening: Medicines, exercise and physical therapy may help increase blood flow, strength and flexibility.
- Osteopenia (weak bones): Ask your doctor if you should be taking calcium and vitamin D supplements or have a test for weak bones. Weight-bearing exercise, such as walking, can build bone strength.
Screening for cancer
A new cancer could be a complication from your treatment. Talk to your doctor about your risk. You can also:
- Follow cancer prevention recommendations (go to aicr.org and click on Reduce your Cancer Risk).
- Ask your doctor if you need cancer screenings (like a mammogram).
When a new cancer is caught early, there may be more treatment options available and those treatments may work better.
Which doctor should I call?
You likely still have many doctors involved in your care. That can sometimes make it hard to know who you should call. Ask your care team these questions:
- Who will manage which parts of my care?
- How are your roles different?
- How will my transplant center share information with my primary care doctor?
- How will my primary care doctor share information with my transplant center team?
- How will information be shared with me?
After-transplant care guides
We offer free after-transplant care guidelines for you and your health care team. They include information on the recommended tests and exams for your checkups.
For you: BeTheMatch.org/CareGuide
For your doctor: BeTheMatchClinical.org/Guidelines