Best practice for chronic GVHD at 100 days after transplant and beyond

Hi. I’m Dr Corey Cutler, a hematologist oncologist and stem cell transplant physician. Reaching 100 days post allogeneic transplant is a major milestone in your recovery journey. You will be discharged to your own home, and your transplant care team may be miles away. You may feel like you got through the first 100 days and are out of the woods, but it’s important to remember that you’re still in a period of risk for cGVHD. As a physician, I must rely on my patients to track changes in their recovery journey and share them with me. Today, I’m going to talk about how our team conducts patient education and symptom assessment of chronic graft-versus-host disease during a day 100 post transplant clinic visit, and take you through a tool to help understand your symptoms and better communicate with your team.

cGVHD develops after a transplant, when donor cells recognize your body as foreign, which triggers an immune response that attacks your organs and tissues. It tends to occur within the first year after your transplant but can also occur any number of years post transplant. cGVHD often starts with subtle changes in your body or health. The eyes, mouth, and skin are most commonly affected. It can also attack joints and connective tissues that surround and hold the internal organs, as well as your digestive system, liver, lungs, and genitals. When early signs of cGVHD are missed, the disease may spread and affect more organs. This can cause damage that impacts your daily activities or even threatens your life. Your goal is to be vigilant when looking for subtle signs and call us, your care team, as soon as you notice a change. If we catch cGVHD early, we have a much better chance of stopping it or preventing it from getting worse. Ultimately, the best practice for managing cGVHD is through timely identification and management. It’s important for both patients and caregivers to actively monitor for any signs and symptoms of cGVHD. Any changes should be communicated to us, as your care team, but also to your local provider or community oncologist, as soon as you notice them. If we catch cGVHD early, we can help prevent progression of the disease, before damage from it impacts your daily activities. We believe that this partnership approach to cGVHD care will help patients live with a better quality-of-life post-transplant. Thank you for watching.

Let’s go over what to expect and how you can be more proactive about monitoring for cGVHD at home. Let’s start with skin, as it’s one of the easiest organs to assess for cGVHD. You can regularly inspect your skin for rashes, flakiness, or changes in color and pay attention to any tightness, scarring, soreness, or cellulite-like changes as well. I know it can be hard to check your back, so use a mirror or ask someone else to check it for you. Look for any new changes such as brittle nails or thinning of hair. Monitor for skin signs daily. You can take photos and keep a record of how symptoms are developing with the symptom tool and how you are managing them to make it easier for you. Don’t dismiss skin symptoms because they could be a sign that your cGVHD is getting worse throughout your body. Don’t hesitate to tell your transplant team as soon as you have a concern, no matter how minor the symptom may seem. We’re here to help you! Thank you for watching.

You may also notice changes in your eyes if you’re experiencing early symptoms of cGVHD. Take note if your eyes are dry, red, itchy, or burning; have grittiness; or if you experience trouble opening your eyes when you wake up or go outside. You can use the symptom tool or the MedLibs to track how these symptoms impact your activities of daily life. Excessive tearing is also a sign of dry eyes. Often times I hear from my patients that they overlook symptoms thinking that they are seasonal allergies, irritation from new contact lenses or just their vision worsening over time. If you need to use eye drops more often, or notice any changes in your vision, it’s important to let us know. In your mouth, you’ll want to track symptoms such as dry mouth, bleeding gums, any ulcers or sores, or any difficulty swallowing food in the symptom tool. Also, be aware of any new sensitivity to spicy or acidic foods or sodas. Your transplant care team will want to know. cGVHD can affect the genitals early on, so don’t overlook any changes or hold back on talking to us about it. Stay vigilant tracking any new dryness or soreness, pain or burning sensation during intercourse, or any changes in sexual activity as these may also indicate the onset of cGVHD. Thank you for watching.

When cGVHD affects the digestive system, it commonly involves the back of the throat. If you have trouble with swallowing, food getting caught, or choking on food, reach out to us! Nausea, loose stools, diarrhea, cramping, weight loss, yellowing of the skin and eyes, and darker urine are also important signs to look out for, as they can mean your gut and liver are being affected by cGVHD. If you start to have diarrhea, write down how many times and how watery the stool was. If you notice unintended weight loss or changes in your appetite, please let us know. If you start feeling stiff, have cramps, or experience trouble moving when you wake up, walk, or take the stairs, be sure to make us aware of these changes. They might be a sign that your cGVHD is affecting your joints. You’ll want to perform your range-of-motion exercises regularly. This includes walking for a few minutes, raising your arms above your head, and moving your arms to the prayer position. Patients may think that their stiffness or cramps are a result of physical therapy, a difficult work-out or just aging. Anything affecting your activities of daily living should be written down in your symptom tool. When cGVHD affects the lungs, it may initially show up as a dry cough and wheezing, it’s important to note this at this point. But over time you may feel more tired or experience shortness of breath after physical activity. If you start to experience limitations in your daily activities due to shortness of breath or fatigue, it could mean weakness in your lung function. Be sure to let us know. Patients sometimes have severe headaches, chest pain, numbness or tingling sensations, discomfort while urinating, or other health issues that are rare but could be related to cGVHD. It’s important that you let us know about symptoms like these as well. There’s never too much information you can share with us. We want to continue to be a part of your post-transplant journey, from day 100 and beyond, to ensure that you get any care that you might need. Thank you for watching.