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The ConfidentPatient:NavigatingChronic GvHD

The path forward

Living with chronic graft-versus-host disease (cGvHD) can bring uncertainty. Symptoms don’t always follow a clear timeline – they may appear weeks, months, or even years after a transplant – and can change how everyday life feels. cGvHD can affect many parts of the body, adding up physically and emotionally.

If you’ve tried multiple treatments and are still struggling, you’re not alone – and you have options. This may be a good time to talk with your care team about how symptoms affect daily life and what other paths may be worth exploring.

Listening to your body

Even when symptoms seem manageable, life with cGvHD can still take a toll. It may limit everyday activities and make it harder to enjoy hobbies or time with family and friends. Some symptoms – like dryness, irritation, or changes in intimate areas – can be difficult to talk about, even with a doctor.

Tracking what you’re experiencing and how it affects you can help clarify whether your current treatment is meeting your needs and if it’s time for a change. The more your care team knows, the better they can determine your next steps.

Questions for your care team

If you have a follow-up appointment with your transplant team or care team coming up, there’s no better time to take stock of your recent symptoms and prepare questions for your doctor. Having an open and honest conversation can open the door to treatment options that may work for you.

Not sure where to start? These questions can help guide your discussion.

    Tracking symptoms
  • My symptoms feel like they’ve gotten worse lately. Does this mean my cGvHD may be progressing?
  • If my symptoms flare or suddenly worsen, what should I do?
  • Is there a chance my condition could progress if we don’t act now?
  • Which symptoms should I be tracking, and what’s the best way to record them?

    Understanding treatment decisions
  • How would you describe my symptom severity? How will that inform your treatment approach?
  • Based on my symptoms and treatment history, what treatment options am I a good candidate for?
  • What will my treatment schedule look like? How often will I need follow-up visits or testing?
  • How will you evaluate whether my treatment is working?

    Exploring treatment options
  • Even with treatment, my symptoms have gotten harder to manage. What could my next steps look like?
  • What other treatment options are available, and how do they work?
  • If we need to switch treatment pathways, what would that process look like?

Symptom Check-in

Take a symptom inventory

Some symptoms may be more severe than others, but if they persist or get worse, it may be time to address them. Let’s check in and see how you’ve been feeling lately.

☐ Nausea, vomiting, or diarrhea
☐ Mouth sores, gum disease, or dry mouth
☐ Vision changes or gritty, dry eyes
☐ Yellowing of the skin or eyes
☐ Skin rash, itchiness, tightness, or swelling
☐ Hair loss
☐ Dry, persistent cough
☐ Shortness of breath
☐ Fatigue
☐ Muscle weakness, cramping, or pain

The Check-up

Sharing your concerns

Symptoms can sometimes be hard to describe. Here are ways to talk about your concerns and jumpstart the conversation:

  • “Some of my symptoms are persistent, but others have worsened. How do I know when to be concerned and when to simply record them?”
  • “I’m having more trouble than usual lately with daily tasks and activities. Can we talk about that?”
  • “Even with treatment, my symptoms haven't improved. Is it time to consider other treatment options?”
  • “I just want to get back to feeling like myself and enjoying life. What can we do to work toward that?”

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