Of the thousands of people who develop chronic graft vs. host disease (cGVHD) every year following a stem cell transplant, it’s estimated that approximately 60% will see it take hold in their mouth. The oral cavity is second only to the skin as the most common site cGVHD attacks.
Many cases of oral GVHD don’t become severe, thankfully, but that doesn’t make it any easier to live with. The sores, ulcerations, dry mouth, and myriad of other issues that result from it are no picnic. And not only are the symptoms of GVHD of the mouth uncomfortable, they can make it extremely hard to eat…which makes it hard to stay nourished at a time when the body needs it most for healing.
In this post, we’ll take a deep dive into all things oral GVHD, exploring effective treatment options and remedies to combat the symptoms of the disease as well as sharing our best tips for maintaining the upper hand in the fight to maintain your oral health through it all.
Symptoms of Oral GVHD
When GVHD attacks the mouth, it targets the salivary glands and tissues inside the oral cavity (hence the name, oral GVHD). If this happens, symptoms can include:
- Ulcers or sores anywhere inside the mouth or on the lips
- Pain inside the mouth
- Extreme dry mouth, due to lack of saliva
- Lichen planus, which are red and white patches or lines inside the mouth (also called lichenoid patterning because the lines often look “lacy” across the cheeks and tongue)
- Dry, cracked, chapped lips
- Changes in taste and sensitivity to certain flavors — like mint, spices, and acidic food — or textured, crunchy food and carbonated beverages
- Redness or swelling, bleeding gums
- Hairy (or coated) tongue that may feel rough
- Painless, fluid-filled areas inside the mouth that come and go (called mucoceles)
You can see pictures of what a mouth affected by oral GVHD looks like here.
Understandably, these symptoms can make it a) hard to feel like eating and b) difficult to swallow. To add insult to injury, having an extremely dry mouth can make infections more likely to take root, and it speeds up tooth decay as well.
One piece of good news? Oral GVHD is NOT contagious…so that’s one worry to mark off the list!
Now, let’s talk about how to minimize the damage…
Treatments for Mouth GVHD
If GVHD is wreaking havoc in a person’s mouth, the first thing doctors usually try is a steroid mouth rinse, often containing dexamethasone, prednisolone, or budesonide.
Steroid gel, like fluocinonide or clobetasol, can also be applied directly to mouth ulcers to reduce inflammation as well.
With either option, immunologist and clinical trial dentist Dr. Jacqueline Mays from the National Institute of Health (NIH) recommends following the medication’s usage instructions to a T, to ensure you’re allowing enough time for the steroid to do its important work.
“If you’re on topical steroids to treat GVHD, the contact time for these medications is critical… but you don’t have to swish these medications as if you’re in a Listerine® commercial. I tell my patients to set a timer for two to five minutes, whatever was recommended for your medication, and read your email, or check out your social media, and then when your timer goes off to just spit the medication back into the sink. You want to just make sure that it has enough time to soak into the tissues within your mouth so that you can receive the positive medication effect.”
In addition to steroid rinses and gels, topical anesthetics can also be used to numb painful areas in the mouth, and your doctor can prescribe medications like Salagen® or Evoxac® to increase saliva production, if necessary. Physical therapy is sometimes helpful if scarring is making it hard to fully open your mouth, too.
Remedies for Dry Mouth
Saliva, or spit, is something we don’t give much thought to…until we don’t have enough of it. Then it’s impossible to think of anything except how dry your mouth feels, how thirsty you are, and how hard it is to swallow.
Not only does saliva keep our mouths moist so they don’t feel like a desert, it also mixes with the food we eat to help it easily pass down our throats, contains enzymes that aid in digestion, and has disease fighting immune cells that keep our oral health in check, too. Too little saliva creates prime conditions for infection and tooth decay, which can lead to cavities, gingivitis, and a host of other health issues.
It’s a little shocking to think about, but we each have up to a thousand minor salivary glands and three major sets of salivary glands that work 24/7/365 to produce one to two LITERS of saliva every single day.
When oral GVHD takes hold, these glands are under attack, which affects their ability to produce saliva…leaving the mouth dry and vulnerable. Here are a few things to keep in mind if you’re experiencing dry mouth:
- Medications like Salagen® or Evoxac® can be prescribed to increase saliva production, if necessary.
- Drink plenty of water — don’t allow yourself to become dehydrated! Talk to your doctor about how many ounces a day you should aim for.
- Frequent, small sips are best to keep your mouth consistently wet.
- Avoid caffeine and alcohol, which can both have a drying effect.
- Eat sugar-free candy or chew gum with xylitol (a sugar alcohol found in many sugar-free candies, which can help prevent tooth decay) to help stimulate saliva production. Lemon flavors are especially effective. Xylimelts® and SparX® are two popular options.
- Moisturizing rinses and sprays like Biotene® or Mouth Kote® may offer relief.
- Talk to your doctor about whether any of the medications you take might be making your dry mouth worse (pain medications and anti-depressants are examples).
Oral Cancer and GVHD
When you have oral GVHD, your risk of developing oral cancer increases…but, says Jacqueline Mays, DDS, MHSc PhD, it’s not something to stress yourself out over.
“We know that the highest risk for oral cancer in post-transplant patients is in patients who have a history of chronic GVHD (cGVHD). Constant inflammation can increase this risk,” she said during her presentation at the BMT Infonet 2023 Survivorship Symposium. “I tell my patients that even though the risk is increased with a history of cGVHD disease, the risk of oral cancer is still very small. It’s something that you should screen for, but not something that you should stay awake worrying about.”
According to Dr. Mays, the most common time for oral cancer to be identified is five to ten years’ post-transplant. The tongue, especially the outside borders that touch your teeth when you’re at rest, are where you often find these cancers.
It’s incredibly important to find a dentist well-versed in GVHD and go every six months for checkups (more on that in our next post!). Also, be on the lookout for changes in your mouth — sores that don’t heal, new bumps or lumps, changes in the color or texture of your tongue or cheeks, etc. — and report those to your doctor right away.
Oral and Dental Hygiene Tips
Good oral hygiene is important for everyone, but it’s especially important for people with oral GVHD.
The dry mouth that often results from compromised salivary glands can lay the foundation for a host of oral health problems — from tooth decay to cavities, gingivitis, and infections, there’s no shortage of issues that can result from having less saliva than you should.
Regular, professional dental cleanings are essential to remove plaque build-up and bacteria — once every six months, ideally. It’s also important to practice good oral hygiene at home — brush twice a day (even after every meal, if you can) with fluoride toothpaste, floss daily, and ask your dentist about using a fluoride rinse to strengthen your enamel. Some dentists will recommend fluoride trays for more intensive, direct fluoride treatment, too.
Here’s a few additional things to keep in mind:
- Make sure you’re seeing a dentist who specializes in oral GVHD. Talk to your doctors to find recommendations or visit this site to search the BMT InfoNet directory.
- Ask your dentist if you need to take medication (antibiotics) before your professional cleanings, to prevent infections.
- Get the all clear from your doctor before you begin flossing — immediately after transplant you might need to avoid flossing to minimize infection risk, but you can resume once your immune system is strong enough. Flossing is incredibly important, so start as soon as you can.
- Consider a water flossing system, which can be gentler on gums than regular floss.
- Use a soft toothbrush to avoid aggravating your gums, and sanitize or swap your toothbrush out regularly to avoid infections.
- If mint flavoring is bothersome to you, try a flavored children’s toothpaste or a toothpaste formulated for sensitivity.
The Problem of Steroids and Oral Thrush
People with oral GVHD are often (necessarily) put on steroids to control their symptoms. An unfortunate potential side effect of these steroid treatments is the development of oral thrush, however…a fungal yeast infection that often sets up shop under immunosuppressive conditions.
If you develop oral thrush you may notice:
- White patches, or lesions, on your tongue or cheeks which may look “creamy” or similar to cottage cheese — your tongue may also look “fuzzy”
- Burning or pain that may be severe enough to interfere with eating and drinking
- Redness, both inside the mouth or on the sides of the mouth
- Cracks on the sides of the lips
- Changes or loss in taste
The infection can also sometimes spread to the roof of your mouth and throat, even into your esophagus, if it becomes severe.
Some of these symptoms overlap with oral GVHD symptoms, so don’t delay contacting your doctor right away if you notice them so they can determine the cause and treat you accordingly. You’ll likely need anti-fungal medications if it’s oral thrush.
Learn to Manage Stress
Stress comes in different forms. There’s emotional, or mental stress, created by emotions like worry, anxiety, or sadness, and physical stress that results from a physical stressor on the body — the effects of a chronic illness, for example.
Any kind of stress sets off a stress response in our body — some people call this the “fight or flight” response. Back in the day when humans were being chased by wild animals and procuring dinner was a little more dangerous than visiting the grocery store, this response kept people alive. Their body sensed the stress and responded by increasing blood flow…prepping them to fight or flee from danger. Our hearts pump faster, our breathing quickens, and our muscles tense in response to the flood of stress hormones suddenly coursing through our body…all in an effort to help us survive.
Modern day stressors are very different (and often less dangerous), but unfortunately for us our bodies aren’t always great at distinguishing real and present danger from other forms of physical and psychological stress that — while incredibly valid — aren’t an immediate life or death threat.
When anxiety and stress becomes chronic and our body is constantly in a stress response state, our health suffers. Blood vessels and arteries stiffen, our energy tanks, and the body holds on to weight. Stress also increases inflammation, which fans the flames of chronic diseases — like GVHD — in the body. It’s a vicious cycle — the disease causes a great deal of stress, and in return that stress makes the disease worse.
If you’re suffering from oral GVHD — or any kind of GVHD, for that matter — it’s incredibly important to find coping mechanisms that work for you, to reduce your overall stress. Here’s a few ideas, but they look different for everyone.
- Learn proper breathing techniques; this is especially imperative if you suffer from oral GVHD, as stress and anxiety can lead to over breathing, which dries out your already dry mouth. Concentrate on breathing in through your nose slowly, from your belly not your chest, and exhale slowly for a little longer than you inhaled. This is called diaphragmatic breathing. Box breathing — when you inhale through your nose to a count of four, hold for a count of four, and exhale for a count of four — is another example of how to re-center and calm yourself using your breath.
- Try mindful meditation. Apps like Calm, Headspace, and Breathwrk might be helpful to guide you in relaxation.
- Take walks in nature.
- Read a good book.
- Create art in whatever form you most enjoy — crafting, coloring, drawing, painting, playing music…it all counts, and you don’t need to be “good” at it!
- Spend time with the people you love.
- Journal your thoughts and feelings.
- Finally, never underestimate the benefit of speaking to a professional counselor or psychologist — living with a chronic disease like GVHD is stressful, and they can help you find coping mechanisms that will carry you through the good days and the bad.
Dietary Recommendations for Oral GVHD Sufferers
Memorial Sloan Kettering Cancer Center (MSKCC) created a fantastic resource full of recommendations for how to combat the side effects of GVHD, including what to eat (and what not to eat) when you’re suffering from dry mouth or oral pain and sores.
Here’s the full guide, but these are some of the important takeaways:
If you’re suffering from dry mouth:
- Avoid “rough” or dry foods — like dry breads and crackers, dry meat, or “coarse” raw fruits and vegetables — in favor of foods with a soft, moist texture that are easy to chew and swallow. Try things like:
- Scrambled eggs or tender-cooked chicken and fish
- Cooked pasta, like macaroni and cheese and casseroles, or bean dishes
- Cottage cheese, smoothies, milkshakes, yogurt, or Jell-O®
- Baby food or other pureed foods, like fruits and vegetables
- Cooked cereal, like oatmeal
- Soups, stews, and broth
- Soft, canned fruits and vegetables
- Dipping baked goods or breads and crackers in liquid — like a sauce or gravy — before eating them
- Sipping nutritional drinks like Ensure®
If you’re suffering from a sore mouth or ulcers:
- Cook your food until it’s soft and easy to chew and swallow, and cut it into small pieces. Consider pureeing your foods in a blender.
- Drink through straws to avoid liquid coming into contact with your mouth sores.
- Bland, lukewarm, or cool foods are better than anything hot or spicy…the recommendations for what to eat are very similar to the list above. You should avoid “rough,” dry foods the same way you do if you’re suffering from dry mouth, and steer clear of:
- Highly spiced food, like things with pepper or chili powder
- Very salty foods, or foods that have a lot of vinegar
- Tomatoes and tomato products like ketchup, tomato sauce, tomato soup, etc.
- Citrus fruits and their products, like lemons (and lemonade), limes, and oranges / orange juice
Additional Resources
If you’d like to keep learning more about oral GVHD, check out these presentations:
https://bmtinfonet.org/video/2022-GVHD-mouth
https://bmtinfonet.org/video/graft-versus-host-disease-mouth
Sources
- https://bmtinfonet.org/video/2022-GVHD-mouth
- https://bethematchclinical.org/workarea/downloadasset.aspx?id=16885
- https://bmtinfonet.org/transplant-article/how-chronic-gvhd-affects-mouth-and-salivary-glands
- https://bethematchclinical.org/post-transplant-care/chronic-gvhd/mouth/
- https://www.aaom.com/index.php%3Foption%3Dcom_content%26view%3Darticle%26id%3D163:oral-chronic-graft-versus-host-disease%26catid%3D22:patient-condition-information%26Itemid%3D120
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5052503/#:~:text=The%20normal%20daily%20production%20of,chewing%20and%20other%20stimulating%20activities.
- https://my.clevelandclinic.org/health/body/23462-salivary-glands
- https://www.mayoclinic.org/diseases-conditions/oral-thrush/symptoms-causes/syc-20353533
- https://www.health.harvard.edu/staying-healthy/understanding-the-stress-response
- https://www.mskcc.org/pdf/cancer-care/patient-education/tips-managing-graft-versus-host-disease-gvhd#:~:text=Drink%20more%20liquids%20to%20help,salty%2C%20sour%2C%20or%20acidic.