cGVHD

Chronic Graft Versus Host Disease (cGVHD) is a complication from the transplanted stem cells. This process can occur around 100 days after stem cell infusion or later.  In Graft versus host disease, the words “GRAFT” refers to the donors stem cells and “HOST” refers to the patient.  This occurs when the donor’s transplanted cells attack the patient’s immune system and body.

Symptoms of Chronic Graft Versus Host Disease:

Most parts of the body can be affected by cGVHD. Some symptoms that patients with cGVHD may develop are skin, liver, GI, eye, oral or musculoskeletal problems.  Some people have obvious signs of cGVHD and others have more subtle symptoms. Chronic GVHD does not happen to everyone.

Skin

• Dry or flaky
• Shiny
• Discolored, red, darker- dirty looking or lighter in small spots
• Thicker or tight

• Itching
• Sensitivity: pain when touched, burning, cuts/ulcers not healing
• Unable to sweat
• Nails have ridges or cracks/splitting
• Hair falls out, becomes thinner or gray, and some patches with no hair

Mouth or Oral

• Red and angry
• White streaks that do not come off when brushed
• Sores or blisters
• Food can taste different or funny

• Dry, less saliva
• Painful/burning
• Unable to eat spicy foods or tooth paste
• Unable to open the mouth big enough to eat a hamburger

Eyes

• Red and tired looking

• Excessive tearing but leads to chronic dry eyes
• Burning or gritty sensation- pain
• Closing eyes in bright light, not wanting to go outside
• More likely to scratch the eye lens
• Blurred vision, not seeing well

Liver

• Person looks yellow (eyes and/or skin)
• Dark colored urine
• Stool lighter to white

• Not complaining in the beginning
• Some tummy pain on right side
• May have more bleeding or bruising

Lung

• No change in the way one looks when sitting
• May have muscles seen at neck if active

• Shortness of breath either at rest or during exercise (walking, climbing stairs)
• Wheezing noise or cough
• May feel like can not catch breath or chest tightness when running
• May have post nasal drip and  more frequent infections-Sinusitis

GI

• Thin

• Nausea and/or  vomiting
• Heartburn
• Abdominal pain every so often
• Weight loss
• Lose stools or diarrhea every so often
• Difficulty swallowing or having pills/food get stuck

Gynecologic

• No noticeable changes on the outside
• Internal changes may include – smaller opening, ulcers, shortening of canal

• May not have symptoms
• Vaginal dryness
• Vaginal itching
• Painful intercourse
• May not get period or menstrual cycle

Musculoskeletal

• May not have may visible signs
• May not be able to straighten the elbow , wrist, knees or ankles
• May not be able to reach up and get things

• Stiffness
• Contractures or parts of the skin that sticks to bones or sinks down
• Joint pain
• Limited range of movement
• Muscle cramps
• Swelling puffy areas like the ankles or wrists

Diagnosis

The diagnosis of cGVHD sometimes requires a biopsy of the affected area. Your transplant team will discuss this with you.  Before the biopsy the transplant team will consider all other possible causes for the symptoms. Your physician may try some local therapy before using oral or intravenous medications to decrease the side effects from the medications.

Treatment

Treatment of cGVHD varies based on symptoms and response.  Most patients are treated with immunosuppressive drugs such as steroids, cyclosporine or tacrolimus and other drugs.   These drugs weaken the ability of the donor’s cells to attack the patient’s tissues and organs.

Each area affected by the cGVHD will also be treated with some topical medications and moisturizers. For example the patient will be putting creams on the skin and may use an inhaler for the lungs. Patients who have lost the ability to sweat must be very careful not to get overheated and decrease time in heat.

Medical Disclaimer

The information on the website is intended to introduce you to some of the medical procedures and treatments which you/your child may receive when undergoing a hematopoietic progenitor cell transplant. The information on the website provides general guidelines but cannot replace the recommendations of your primary medical team. Specific patient care treatment options and procedures are the prerogative of each patient and their medical care team. You are encouraged to discuss any concerns or questions you have with your medical care team. Although every attempt has been made to post information that is clear and accurate, no guarantee is made to the reliability, completeness, relevancy, accuracy, or timeliness of the content. No liability is assumed by the Pediatric Blood and Marrow Transplant Consortium for any damages resulting from use or access to information posted on this website.