If you have leukemia or lymphoma, or another noncancerous condition, you may get transplants of stem cells from a donor’s blood or bone marrow to help your body produce blood cells again. In rare cases, though, you may then develop a potentially serious condition called graft versus host disease (GvHD) because of the transplant. There are two kinds: chronic (cGvHD) and acute (aGvHD). Chronic graft versus host disease can be treated, but treatment can take months or years.
What Is Chronic Graft Versus Host Disease (cGvHD)?
With both kinds of GvHD, certain kinds of white blood cells in the donated stem cells decide they aren’t foreigners in your body -- your body cells are! These T cells from the transplant start to attack your body cells.
While these attacks might produce aGvHD symptoms right away or within 100 days of the transplant, cGvHD can suddenly appear several years later. When it does, it may affect your skin, liver, mouth, lungs, gut, nerves, or muscles. That’s more affected body parts than with aGvHD.
Why do T cells attack your body cells? Usually, it has to do with proteins in your body cells called human leukocyte antigens, or HLAs. You inherit your HLAs from your parents, and unless you have an identical twin, they are unique to you.
If the transplanted T cells don’t recognize your HLAs, they may treat your body cells as foreign and attack your tissues and organs. Depending on how many organs are affected, your doctor will grade your cGvHD as mild, moderate, or severe.
That’s why a doctor does blood tests on your donor and you before a stem cell transplant to see how closely the HLAs match. The more differences, the likelier you are to get GvHD.
The symptoms of cGvHD differ depending on what part of your body is affected. They can include:
- Skin: Rash; dry, tight, or itchy skin; skin that looks discolored or darker; thickening or bumps
- Gut: Sore and dry mouth, painful swallowing, bloating, heartburn, stomach cramps, weight loss
- Liver: Swollen belly, yellowness in skin or eyes
- Eyes: Dryness, burning sensation, being sensitive to bright light
- Lungs: Shortness of breath, wheezing, dry cough, higher risk of chest infections
- Genitals: In women, inflamed and narrow vagina, inflamed vulva, dry and burning feeling during sex. In men, a hard time urinating, painful sex.
- Connective tissues: A hard time straightening or bending arms and legs, joint stiffness or spasms, tightness in joints
- Mouth: Dryness, white patches, pain, being sensitive to spicy foods
- Nerves and muscles: Fatigue and weakness, pain
If you have any of these symptoms and you have a fever over 100.4 F, tell your doctor right away. The cGvHD symptoms increase the chances of infection.
Getting a Diagnosis
The doctor handling your bone marrow transplant -- probably a hematologist (blood doctor) -- might diagnose GvHD with a physical exam. But cGvHD symptoms can be unclear, which makes the diagnosis hard. If you have skin GvHD, you might be referred to a dermatologist (skin doctor).
More tests might be needed to get an accurate diagnosis. Your doctor may recommend:
- A skin biopsy. You’ll get a local anesthetic shot to numb your skin. Then a small sample of skin is removed so that a pathologist (a doctor who finds diseases by looking at tissue) can test it in the lab.
- A liver biopsy. You get an ultrasound or CT scan to help the doctor guide a needle to the right part of your liver. The needle removes a sample of liver tissue so it can be looked at closely in the lab. You may have to stay in a hospital for a few hours, or overnight.
- An endoscopy. A doctor puts a tube with a camera down your esophagus to look at the inside of your stomach and get a tissue sample.
- A colonoscopy. This lets doctors inspect the inside of your intestines.
- X-rays and CT scans. These allow doctors to look at your lungs (or other parts of your body).
- Lung function tests. These tell how well your lungs are taking in oxygen and how quickly.
Questions for Your Doctor
As you prepare for your stem cell transplant, you should ask your doctor:
- What are my risks of getting cGvHD after the transplant?
- Can I do anything to reduce my risk of cGvHD?
- What symptoms of cGvHD should I watch out for?
If you are diagnosed with cGvHD, you will have questions for your doctor, like:
- What medications can help treat cGvHD?
- How effective and expensive are these medications?
- Will there be any side effects?
- How long will I need to take these medications?
- What else can cGvHD treatment involve?
The treatment your doctor recommends will depend on how bad your cGvHD is (mild, moderate, or severe) and which parts of your body it affects.
But most treatment for cGvHD starts with taking steroids. Your doctor also may prescribe one or more medications called immunosuppressants. These medications stop your body’s immune system from damaging healthy cells and tissues. So, they help make sure your body accepts the transplanted stem cells. Immunosuppressants are powerful medications, so you need to follow your doctor’s instructions carefully. You may take them for weeks or months.
Immunosuppressants can have side effects like acne, fatigue, hair loss, headaches, and high blood pressure. And since they make your immune system less effective than usual, you have a higher risk of getting an infection. You should call your doctor if you start to feel extreme fatigue, pain, or nausea while you take these medications.
Also, the FDA has approved using targeted treatments like monoclonal antibodies to treat adults with cGvHD. Other treatments target specific proteins that are key to the inflammation and scarring process seen in cGvHD.
Your cGvHD treatment isn’t just about medication. If your skin is affected, your doctor also may recommend moisturizers and light therapy. If cGvHD is in your gut, you may need fluids for diarrhea. Eyedrops can help with cGvHD in your eye. Steroids and antibiotics may be needed if your lungs are affected. It all depends.
Taking Care of Yourself
Looking after your health during a stem cell transplant starts with telling your doctor about signs and symptoms of cGvHD right away and following your doctor’s instructions closely with medications.
You can take steps on your own to help lessen any issues during your cGvHD treatment. It can help if you:
- Try to manage stress. Track your sleep and get enough relaxation time.
- Eat a well-balanced diet and cut fat.
- Exercise regularly, several times a week with different activities.
- Avoid spicy or acidic foods if cGvHD affects your mouth.
- Wear a hat and long sleeves when you are in the sun, if you have skin cGvHD.
- Rest your eyes regularly and try a humidifier or compresses, if cGvHD affects your eyes.
What to Expect
Sometimes cGvHD treatment can last for months or even years. You will have regular doctor’s appointments, at least every 6 months. Once treatment starts, doctors may try two or three medication combinations until they find one that works best for you. It can be tough, but it helps to be patient.
Also, treating cGvHD can be extremely costly, even if you have good health insurance. Deductibles, copays, and co-insurance can add up. You should not feel shy about asking your doctor’s office about payment plans, talking to a financial assistance specialist at your hospital or cancer center, or applying to copay or patient assistance programs.
You should turn first to your family and friends for the support you will need during cGvHD treatment like transportation, cooking, or just an understanding chat. Don’t be shy about asking for help -- others want to give it to you!
Outside your intimate circle, you will be surprised by the number of sources of specialized, and free, assistance. You can benefit by turning to:
- Remote and in-person support groups through the Smart Patients Community (free GvHD discussion forum) and Blood and Marrow Transplant Information Network (Facebook group)
- Programs and information from groups like the National Organization for Rare Disorders, Leukemia and Lymphoma Society, and Be the Match Registry
- The many groups helping cover your copays and other medical expenses. Partnership for Prescription Assistance and Patient Advocate Foundation are just two of them.