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Getting home after an allogeneic (donor) stem cell or bone marrow transplant for lymphoma is a milestone — but recovery doesn’t stop there. One possible complication to watch for is graft-versus-host disease (GVHD). GVHD happens when immune cells from your donor see your body’s healthy cells as foreign and attack them.
GVHD can happen in two main forms: acute and chronic, and their symptoms can look very different. Up to 40 percent of people who receive a donor transplant develop acute GVHD, while up to 60 percent of long-term transplant survivors develop chronic GVHD.
Knowing what symptoms to watch for can help you get care sooner. Tell your cancer care team about any new or worsening symptoms, even if they seem mild. This article walks through the potential symptoms of both forms and what makes them distinct.
Acute GVHD typically develops within the first 100 days after a transplant and mainly affects the skin, digestive tract, and liver. Chronic GVHD usually begins after day 100, can appear up to several years later, and tends to involve a wider range of organs. Health experts consider acute and chronic GVHD separate conditions that arise through distinct biological processes.
Your care team diagnoses each form based on the specific symptoms you’re experiencing. You might also hear the term “overlap syndrome,” which describes cases where features of both forms appear around the same time.
Doctors diagnose acute GVHD by looking for changes in three main organ systems — the skin, digestive tract, and liver. You can have symptoms in one, two, or all three at once. Most people with acute GVHD have skin or digestive symptoms, while liver involvement is also common.
The skin is often where acute GVHD appears first. A rash typically starts on the palms, soles, ears, face, or upper trunk, and it may spread from there.
On lighter skin tones, the rash often appears pink or red. On darker skin tones, it may show up as deeper red, purple, or brown discoloration that can be harder to see — making any new itching, burning, or tenderness an equally important clue.
The rash can feel somewhat like a bad sunburn. In more serious cases, blisters or skin peeling can develop. Any new rash after a donor transplant is worth reporting to your care team right away, even if it seems minor or covers only a small area.
Acute GVHD frequently affects both the upper and lower digestive tract. Upper digestive symptoms include nausea, vomiting, loss of appetite, and feeling full after eating only a small amount. Lower digestive symptoms include large amounts of watery diarrhea, stomach cramps, and — in more serious cases — blood in the stool.
Tracking how often diarrhea happens and roughly how much you’re having can help your care team assess how significant it is. These symptoms can overlap with other posttransplant side effects, so it’s worth flagging them rather than assuming they’ll pass on their own.
Liver involvement in acute GVHD often doesn’t cause visible symptoms at first — it typically shows up on blood tests before you can see or feel anything. This is one reason your healthcare team monitors liver function regularly in the months after transplant.
When visible signs do appear, the most noticeable is jaundice — a yellowing of the skin or the whites of the eyes. Other signs include dark, tea-colored urine, pale stools, and discomfort on the upper right side of the belly.
Chronic GVHD can affect a broader range of the body than acute GVHD. Most people with chronic GVHD experience mild to moderate symptoms, but about 10 percent to 15 percent develop more severe disease.
Chronic GVHD sometimes follows acute GVHD and sometimes appears on its own. Either way, its symptoms tend to come on gradually — which is part of why regular self-checks matter, since chronic GVHD often develops after your transplant visits have become less frequent.
Because its symptoms can resemble other conditions, your care team may sometimes need a biopsy (a procedure that removes a small tissue sample that is sent to a lab for analysis) to confirm the diagnosis.
Unlike the rash of acute GVHD, chronic GVHD skin changes tend to develop slowly. Skin may become thickened, tight, or leathery in texture, and patches may look lighter or darker than the surrounding skin.
Hair may thin, turn gray prematurely, or fall out in patches. Nails can develop ridges, split, or begin to separate from the nail bed.
Doing a weekly check of your skin, hair, and nails — including areas that are hard to see on your own, like your back — can help catch these changes early.
The eyes and mouth are among the most commonly affected areas in chronic GVHD, and symptoms here can quietly affect daily life.
Eye symptoms include persistent dryness, a gritty or burning sensation, light sensitivity, tearing, and blurred vision. Mouth symptoms include dry mouth, white lacy patches on the inside of the cheeks, sores or ulcers, chapped lips, and sensitivity to spicy or acidic foods. These changes can interfere with eating, speaking, and comfort.
Eye and mouth symptoms are worth mentioning to your care team even if they feel manageable. Corticosteroids (medicines that reduce inflammation) and other targeted treatments are often effective, and catching changes early helps.
Chronic GVHD can show up in several other parts of the body. Lung symptoms — a persistent dry cough, shortness of breath, or wheezing — may point to lung conditions that can become serious without early treatment, so report these promptly.
Joint and muscle symptoms include stiffness, reduced range of motion, and cramping or weakness. Digestive symptoms can include trouble swallowing, nausea, diarrhea, or unexplained weight loss.
Genital symptoms such as dryness, irritation, or discomfort are common but often go unmentioned. They’re worth raising with your care team, since they tend to respond well to treatment.
Transplant experts recommend calling your care team immediately if you notice any new or worsening symptoms — don’t wait for a scheduled appointment. Reach out right away if you notice:
For more gradual changes — such as mild joint stiffness, dry eyes, or subtle skin changes — mention them at your next visit. Consider taking photos of any visible changes, such as a rash or new skin patches, to bring to your appointment.
Acute and chronic GVHD can look very different from each other, but both benefit from early recognition and open communication with your cancer care team. Whether it’s a new rash a few weeks after your transplant or gradual joint stiffness several months later, any symptom that’s new or worsening deserves attention.
A few steps can help you stay prepared: Keep a short daily log of any new symptoms and when they first appeared, save your transplant clinic’s after-hours number in your phone, and ask a caregiver or loved one to help check areas that are hard to see on your own.
Health experts also recommend examining your skin, eyes, mouth, joints, and genitals weekly for anything that wasn’t there before. If something feels off, reach out — catching changes early gives your care team the best chance to help.
On MyLymphomaTeam, people share their experiences with lymphoma, get advice, and find support from others who understand.
Have you ever noticed a symptom that turned out to be GVHD? Share your experience in the comments below.
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