Oral Graft-versus-Host Disease: From Surviving to Thriving

(00:01): Jordan Sexton: Introduction. Welcome to the workshop, Oral Graft-versus-Host Disease: From Surviving to Thriving. My name's Jordan and I'll be your moderator for this workshop. Before we begin, I'd like to thank Incyte Corporation, whose support helped make this workshop possible.

(00:13): It's my pleasure to introduce today's speaker, Dr. Katharine Ciarrocca. Dr. Ciarrocca is an oral medicine specialist and director of Duke Oral Medicine and Hospital Dentistry. Her practice focuses on medically complex patients and how that complexity affects the oral cavity. She and her team manage the acute complications of chemotherapy and stem cell transplantation, including both acute and chronic oral graft-versus-host disease (GVHD). She works with the patient and the patient's oncologist to find the best individualized treatment regimen to improve symptoms, maintain function, and improve the patient's quality of life. Please join me in welcoming Dr. Ciarrocca.

(00:52): Dr. Katharine Ciarrocca: Overview of Talk. Thank you, Jordan. So, welcome. I appreciate you all coming out today. I'm going to speak with you about Oral GVHD: From Surviving to Thriving, and I hope to provide you with some great insight on how to better manage your disease.

(01:14): Today, our learning objectives are to talk about the normal anatomy and function of the oral cavity. We're going to talk about how chronic graft-versus-host may affect your teeth, gums, and the lining of your mouth and throat. We're going to speak of safe and effective approaches to managing oral GVHD, the importance of long-term follow-up, and how you can find and work with a local oral healthcare professional or oral medicine specialist who has expertise in oral GVHD.

(01:50): Oral medicine is a specialty that treats medically complex patients. First I'll start by talking about oral medicine, which is the specialty of dentistry that's concerned with the oral health of medically complex patients. The reason I mention this is because this is not a widely known specialty of dentistry, like orthodontics and periodontics and things like that, but it is a highly specialized fellowship-trained specialty that helps medically complex patients.

(02:26): Oral medicine integrates medicine and dentistry and has to do with the diagnosis and complex treatment of these orofacial diseases, as well as oral complications of systemic disease. At Duke Oral Medicine, we do a wide variety of the general oral medicine type of treatments, but I'd like to highlight for you the oral ramifications of cancer and its treatment, so things like mucositis, GVHD, dry mouth, osteoradionecrosis, and trismus.

(03:08): The orofacial complex includes more than just teeth. I'll start off with just talking about the orofacial complex. It's very easy because I am a dentist by training and people make the automatic assumption, “dentists, teeth - it's all about the teeth.” But the reality is that it's not just the teeth, it is the mucosa or the soft tissue lining of your mouth, the salivary glands or your spit glands, your saliva, of course the dentition or the teeth, the periodontium, which is the gums and the bone that help hold the teeth in. And then there's the whole temporomandibular joint and chewing system. And that makes up the whole orofacial complex. So, as you can imagine, there can be many effects of long-term treatment.

(03:56): A basic oral exam can assess the health of the orofacial complex. I am going to go through a basic oral exam. The reason I do this is because it helps us learn what normal tissues look like, so that when I show you some pictures of abnormal tissues, you'll have an idea. It's not a bad idea to look around your own mouth to make sure things are normal appearing.

(04:18): We start with the outside and work to the inside. We start with the lips, and the theme for all of this is that there is a consistency in color and in texture of the structure. Lips are smooth, are pink, and have that consistency of color and texture. Same with the labial mucosa, which is basically the lining of the lips. And you can see in these pictures, we evert  the lips (turn them outward) to be able to look at them. Then the insides of the cheeks, or what we call the buccal mucosa, where we're looking for pink, healthy, consistent-looking smooth tissue.

(05:02): Your gingiva, which is the big word for gums butt up against the teeth and then they extend and you can see how this is very light pink. Then it transitions into a darker red, which is where the mucosa begins.

(05:22): Your tongue. We look at the top of the tongue, the bottom of the tongue, the sides of the tongue, the back of the tongue, and then we look at the floor of the mouth, which is below the tongue at the base of your mouth. Then we look at the roof of your mouth, the top of the mouth, so the hard palate part of it, and even the soft palate part which starts to extend into your throat. As you can see, there are multiple parts to the orofacial complex; therefore, multiple parts that can be affected by oral disease.

(05:59): Oral graft-versus-host disease (GVHD) is the oral component of chronic GVHD. Let's talk about oral GVHD, which is what we're here to speak about today. Oral GVHD is the oral component to chronic graft-versus-host disease, which is a frequent and serious complication following allogeneic stem cell transplants. Oral chronic GVHD is very common actually, and in some cases the mouth can be the only affected area of the body.

(06:32): Oral GVHD is caused by transplanted donor cells that mount an immune attack. The symptoms of oral GVHD include pain, which is obviously a problem, and sensitivity to normally tolerated foods. It can also affect mouth opening and it can cause dry mouth. What causes it? The basic explanation is these wonderful new donor immune cells, that are taking over the body and making a new immune system, see the patient's body as foreign and they mount an immune attack. So this risk of developing chronic GVHD is greatly dependent on how well-matched the donor is to the recipient.

(07:20): Common forms of Oral GVHD are reticular and ulcerative GVHD which can occur alone or together.  How does it look when it's in the mouth? There are different forms of it. One of the more common ones is a reticular GVHD. Reticular means just the appearance of it, and you can see this is the most common form. It looks like white lacy lines and it often affects the inner cheeks or what I call the buccal mucosa, the sides or top of the tongue. When it's in this pure reticular form, it is typically not painful. Sometimes patients will complain of roughness, a sensation of roughness in their mouth, but otherwise it is pretty asymptomatic.

(08:03): Then there's ulcerative GVHD, which appears as smooth, red, and/or yellow lesions. It very often affects the buccal mucosa or the insides of the cheeks. I, can look like canker sores and the ulcers can be quite large. This patient of mine had a very large, red, very painful ulceration.

(08:30): There can be a combined reticular and ulcerative form, which is probably what I see the most often. But these are ulcerations surrounded by wispy white lines, and those wispy white lines represent healing. So, the body's trying to heal it, but you have that central area of ulceration that is very, very painful.

(08:56): There can also be sclerodermatous GVHD with a hardening of the skin and mucosa. There's also a sclerodermatous type of GVHD that can affect the oral cavity. It results in thickening and hardening of the skin of the face and neck, but intraorally it can do the same thing: it can harden and make the mucosa (the lining of the mouth) thick and feel tight, and this translates into difficulty opening the mouth.

(09:20): In this patient of mine, we can see the red irritated lesions on his palate and maybe even see on his right inside cheek that it's very irritated. Once that heals, then you can see that that more whitish area has replaced the red areas, but that whitish area is actually scarring. And if you can appreciate the distance between his teeth, that is as wide as he can open. This translates into something we call trismus, which is limited mouth opening.

(10:10): Here you can see an example of a patient who can really only open his mouth about 10 millimeters, and that makes eating, chewing, and swallowing very difficult. Normal opening can be anywhere from 50 to 60 millimeters, so it can be a huge problem for patients.

(10:30): Then we have GVHD of the salivary glands or the spit glands. That translates into dry mouth, which is a significant problem among oral GVHD patients. One thing you may see in your mouth is superficial mucoceles, which are big words for little bubbles that form on the roof of the mouth. We have hundreds if not thousands of minor salivary glands. If you feel with your tongue on the inside of your lip, then it feels kind of lumpy, bumpy, that's normal. Those are little minor salivary glands that make lots of good saliva.

(11:14): What happens in GVHD is that these glands become temporarily blocked and the saliva doesn't come out. Instead, it fills the gland, makes these bubbles and they burst very easily. They often come and go with meals and they're more of a nuisance. It's rare that these are painful, but patients will complain about, "Oh, I eat and I get these bubbles on the roof of my mouth, and then they burst and sometimes will make a sore." So that's one part of the effects on salivary glands. The other part will be oral dryness and I'll speak about that in a few minutes.

(11:55): Oral GVHD symptoms can come and go but stress or certain foods can worsen the symptoms. What should I expect after I've been diagnosed with oral GVHD? Well, your symptoms will come and go. There will be periods where it is better, and you don't even notice it, and then it can worsen for a variety of reasons. One of the more common reasons that it worsens is from stress, whether that be a physical stress like you are ill and it's a stress in your body. Or you can go through emotional stress like a death in the family or a work-related stress. Those stresses can all worsen your oral lesion.

(12:34): It also can worsen with certain foods, and that depends on the person. There is a list of commonly known oral irritants that we often will recommend people avoid, but it is a very personalized thing that some people are able to eat things that others can't. And then oral GVHD can persist for many years even though sometimes it does burn out.

(13:08): How are oral GVHD mucosal lesions treated? There are a variety of treatments. If you're already on a systemic treatment for GVHD in other areas of the body, it obviously will have a really great effect on oral GVHD. I work very closely with our bone marrow transplant group, our blood cancer group, to try to balance that out because obviously we want people to be on as few systemic medications as we can, but sometimes it is very helpful in managing oral GVHD.

(13:47): Oral GVHD may be treated with gels, rinses, ointments, or steroids. There are lots of topical agents, steroid gels, steroid rinses, tacrolimus ointment. Those are very helpful depending on the severity of the oral GVHD.

(14:00): And then if you have a really stubborn oral lesion that just will not heal, we can do intralesional injections with a steroid, which is a painful treatment, but it only lasts about five seconds and it really can help heal a lesion that's not responding to treatment.

(14:24): The other important thing is, certain treatments can increase your risk of developing a yeast infection. So we often prescribe a preventive yeast treatment, so that you're taking care of the oral GVHD but then not causing another problem.

(14:48): Treatment can wax and wane as symptoms come and go. Long-term, after the symptoms are controlled, the treatment is reduced to the lowest amount needed to maintain comfort, and the frequency of treatment may be increased during flares of the lesions. If there's no discomfort, it's a good idea to stop treatment completely, to let your mouth rest, rather than to continually use topical treatments. Topical treatments being used in periods of no symptoms do not provide any sort of I’ll little bit about dry mouth and we'll talk about how we treat dry mouth. This is actually true for whether you have dry mouth from GVHD or not. This is just the basic approach to treating dry mouth.

(16:35): Saliva provides many protective functions as well as food and speech-related functions. You've never realized how important saliva is until you don't have enough of it. It has all sorts of really great functions, many protective functions, and then food and speech-related functions. These protective functions are things like lubrication. Having enough saliva also keeps the balance of the various bacteria and microbes that live in our mouth, that keeps them balanced out. It helps to keep the lining of our mouth intact, so when your mouth is drier, it is more easily traumatized because you're lacking that lubrication.

(17:21): Saliva helps to lavage and cleanse the teeth and the lining of the mouth. I often will have patients who have dry mouth who will complain of getting a lot of food stuck in their teeth and a lot of times that's simply because they lack that lavage or cleansing aspect to it. And then saliva helps buffer the mouth and remineralize. What does that mean? That means it helps keep the teeth strong. It has minerals in it that constantly bathe the teeth and keep the teeth strong.

(17:55): As far as food and speech-related functions, there are things that are simply related to preparing our food as we chew it. As one is chewing food, that's the food preparation. It helps to start digestion. It actually helps us to taste better. When your mouth is really dry, your taste is not as keen. And then it helps us speak because when you do not have enough saliva to lubricate the parts of your mouth, everything sticks together.

(18:25): What are the complications of dry mouth? These all correlate to what I talked about in the previous slide, the functions of saliva. We have mucosal abnormalities. You have frequent trauma along the line of your cheek where your teeth meet, or the sides of your tongue. 

You have an increased risk of developing candidiasis, which is an oral yeast infection. You'll also hear people call it thrush. Yeast lives in all of our mouths, but sometimes in patients who have a really dry mouth, it doesn't keep the balance intact and it gives that yeast a chance to overgrow.

(19:08): You can also have a coated tongue from not having enough saliva, because the surface of your tongue becomes more sticky without that lubrication, and keratin builds up on the surface of the tongue. It can give you bad breath because you are not having that lavage or cleansing aspect. It can cause a great difficulty in swallowing.

(19:33): I work commonly with the speech and language pathologists who help patients with dysphagia or difficulty swallowing. I work on the end of things where the mouth is dry and the lack of saliva, and they work on the functional aspects of swallowing.

(19:49): Periodontal disease or gum disease. You don't have that saliva to help wash and keep the teeth clean and keep the gums healthy and then again, caries, which is the big word for cavities. And so you can see in this patient, who had a severely dry mouth, that their teeth just slowly, over time, decay to the surface of the gums.

(20:17): How is dry mouth treated? Some of the really simple tips and tricks that you can do are just simple behavior modifications. Limiting alcohol, limiting caffeine, and that's not to say you can't have it at all, but those are both very drying agents. Not using mouth rinses with alcohol, looking for mouth rinses with, say, zero alcohol if you are a mouth rinse kind of person.

Sipping water, staying hydrated. If you are dehydrated, you do not have the reserve in your body to make the approximately one liter of saliva you're supposed to make on a daily basis. Sucking on ice chips. 

People complain about dryness at night. Using a humidifier to keep the air more moist. Any sort of sugar-free stimulant, a salivary stimulant. What do I mean by a stimulant? That means anything that's going to essentially trick your spit glands into thinking they need to make saliva. So chewing sugar-free gum or sucking on hard candies that are sugar-free, or lozenges.

(21:27): There are several salivary stimulants that can treat dry mouth from oral GVHD. This is the list of patient-recommended salivary stimulants that we use commonly. There's a whole line of lozenges or gums that are made specifically for dry mouth patients. MighTeaFlow uses a component of green tea that's super saturated, that helps to heal salivary gland tissues. ACT Dry Mouth Lozenges are something I was not aware of, but they come in multiple different flavors and they're very well tolerated. And then really any sugar-free sour candy is enough to just keep that spit flowing.

(22:17): Then there are adhesive products, a XyliMelts or a XeroStrip, and they actually adhere to your gum tissue and slowly dissolve over time. So if you're someone who doesn't like having something floating around in your mouth, they're very, very helpful.

(22:33): There's a whole variety of oral moisturizers, oral lubricants, and gels. The one and only Biotene product that makes our list is this Oral Balance Gel and it is simply a gel that can be used prior to eating. It can be used on a very sore tongue that's dry. And then there are a variety of other sprays that work and they're easy to apply and kind of discreet. You can do it in public.

(23:06): At the end of the day, it is a very personal preference. It is dependent on mouth feel. Some people like how some things feel and some things don't feel. It is also a flavor dependency thing. Some people don't like fruit flavored things. So there is a lot of trial and error, but there are many products out there.

(23:29): There are two medications to treat dry mouth. And then finally there is actually a medication. There are two medications that essentially prime your spit glands to make as much saliva as possible. You take them about 15 minutes before you eat. They get those spit glands ready to go, and then you eat and it helps provide enough lubrication and saliva for you to get through a meal. What we've found is that you can take this medication, maybe take one before bed, and it provides enough moisture overnight to help with nighttime dryness.

(24:09): It’s not without side effects. It can cause an increase in sweating, which is probably the most common side effect I hear about. It can also have some effects on belly acid; it's a medication that makes things secrete a liquid, so think of it that way. So secreting saliva, secreting acid, secreting sweat, I have many patients who have zero side effects from it, but those are things to be aware of.

(24:44): The other important information about having a chronically dry mouth is that you need to see your dentist regularly, a general dentist, because you may need more frequent evaluation. You need to be very meticulous in your oral hygiene because you're lacking that saliva that can help with keeping things healthy in your mouth. Oftentimes we recommend a prescription-strength fluoride toothpaste, rinse, or gel to try to counteract the effects of that dryness. And trying to be mindful of sugary foods and drinks, things that are going to constantly bathe your mouth in sugar which can really increase your risk of cavities.

(25:33): Is oral chronic GVHD a risk factor for oral cancer? And the short answer is yes, it is. Patients with chronic oral GVHD have a significantly increased risk of developing oral cancer and should undergo an oral cancer screening at least once a year. My hope is that it's even more than that, because you will be visiting your regular dentist for just your general evaluations, and that should be a standard part of your dentist's oral exam.

(26:11): Since oral GVHD can look similar to early cancer, it is best to be seen at least once a year by someone who's familiar with looking at these conditions. Occasionally, periodic biopsies of suspicious lesions may be necessary.

(26:29): This is a patient of mine who had oral GVHD and presented to me like this. I had not seen her before and this in fact was a tongue cancer. We took biopsies and then referred her to the appropriate head and neck surgeon.

(26:49): Oral squamous cell carcinoma is the cancer that we see with chronic oral GVHD patients. It affects them more frequently than non-chronic GVHD patients. And why is that? Well, that's probably because of the extended tissue inflammation.

(27:08): What we know is that the better controlled the disease is, the lower the cancer risk is. But at the same time, there is always a baseline immunosuppression among bone marrow transplant patients and so that alters the body's ability to regulate and surveil for cancer. And it just increases the risk.

(27:35): This is a patient of mine who had chronic oral GVHD. She had a bone marrow transplant for aplastic anemia, and the area on her lower back teeth, gingiva, her gum, was just chronically inflamed and would not heal. And so that's a really important part of this, too. If what you're doing to treat a sore area is not working, then you need to follow up and be evaluated, and repeat biopsies may be needed. This in fact became a cancerous lesion and she had to have those teeth removed and part of her tissue removed. They were able to put a flap in there, a flap of tissue, and she’s doing just fine now, but she is on a much more frequent surveillance.

(28:35): Oral GVHD should be assessed by a specialist who is familiar with this condition and the risk of developing oral cancer. The point being that you want someone who's familiar with looking at these areas and this disease process, to be taking a look at you. You also want to be sure that if what you're doing to treat these sore areas is not working, that you pursue some sort of follow-up.

(28:57): So, final thoughts and then we'll have time for questions. Oral GVHD can be very painful. It can be not so much painful but very annoying, and these effects can alter your quality of life because they affect your ability to eat, to speak, and simply be comfortable.

(29:24): Patients with oral GVHD should actively seek treatment to minimize symptoms and future risks. You do not have to live with the pain or the nuisance of it. I always say to my oral GVHD patients that they're the toughest patients I have. Not tough to manage, but they are just so willing to put up with the discomfort of either the dryness or the soreness of the lesions, and I always encourage them to not be tough, to address the issues that are bothering them. So if their mouth is sore when they eat, they need to treat it, not to just endure that soreness. You don't have to live with it. It is key to decrease any inflammation in there, not only from a quality of life and comfort standpoint, but also for making sure that we are keeping the risk of developing oral cancer at its lowest.

(30:30): Having the mouth stay moist not only gives you comfort, but it can also help with the soreness that you experience. I encourage all my patients to do self-exams and that's why I went through that normal tissue part of the presentation. It is so important that we are aware of what our body looks like.

(30:51): Self-exams and learning to avoid things that cause oral GVHD flares are important forms of self-care. I often think about what has been done in the breast cancer realm with encouraging people to do breast cancer self-exams. I tell everyone to do the same thing in the mouth, to take a look around, look for lumps and bumps, look for areas that aren't healing, look for areas that are concerning, and have them looked at.

(31:16): Pay careful attention to what you eat when you have either dryness or soreness from lesions. Know what exacerbates them or makes them worse. From a dryness standpoint, know what puts you at a greater risk of oral disease, things like cavities and gum disease. And regular follow-up with someone who treats oral GVHD is very important, because they're comfortable in doing so.

(31:46): There are several good resources for help with oral GVHD. With that being said, there are some really great, helpful resources. My academy, the American Academy of Oral Medicine, has a great website that has an entire section of patient information about a variety of different disorders that we treat. But the other thing that's great about this website is that you can find my colleagues who are also trained and boarded in oral medicine, who may be able to help you with your oral disease.

(32:22): There's also a fantastic pamphlet. It's more than a pamphlet. It's like a booklet that is distributed by BMT InfoNet that talks the full gamut of graft-versus-host disease. And finally there is, through BMT InfoNet, a directory of GVHD clinics and providers, and it's specific to oral GVHD. You can get on there and do a search. I know I'm on there, and I think that's how I got connected with the group, but that's how you can find someone in your area who is comfortable with treating oral GVHD.

Question and Answer Session

(33:18): Jordan Sexton: Thank you very much, Dr. Ciarrocca. Excellent presentation. We're going to take some questions now. Our first question is, "Have you seen tooth displacement or movement with oral GVHD? What are some of the recommendations to help correct oral bite?"

(33:51): Dr. Katharine Ciarrocca: That is a very interesting question. In all my years I have not seen tooth movement, like orthodontic tooth movement, related to oral GVHD. I think that teeth could potentially move or become loose if you have oral GVHD that affects your gums, because then those chronically inflamed gums could affect the underlying bone and affect and infect; essentially your teeth become loose. But I have never seen teeth that move, and make you have an altered bite, due to GVHD.

(34:42): Jordan Sexton: "Do you have any thoughts on mouth taping to decrease dry mouth issues at nighttime, during sleep?"

(34:50): Dr. Katharine Ciarrocca: That's a great question too. I never recommend it, but I do have patients who do it. I think that we all very often will sleep with our mouth open and that causes further dryness, but I do not think that addresses the root cause of the dryness. I think some of the interventions that I spoke about earlier are much more effective.

(35:22): Jordan Sexton: "Do you have any suggestions for those who don't like or cannot tolerate sugar-free products?"

(35:30): Dr. Katharine Ciarrocca: Another great question and I in fact had a big conversation with someone yesterday, because that is one thing: many sugar-free products use xylitol, which is wonderfully helpful. It helps to kill bacteria in the mouth actually, but too much of it is not a good thing. It can cause diarrhea, and for patients who have irritable bowel syndrome or a sensitive gastrointestinal tract, it can cause some diarrhea. So my recommendation is to actually look for alternatives. There aren't many out there, but you would definitely have to read ingredients and try to avoid xylitol where possible.

(36:20): The reason we recommend sugar-free is because, just going back to that, bathing your teeth constantly with sugar can be very, very detrimental. So I think that if you need to occasionally use a sugared hard candy or something like that, it's fine, but you need to make sure you're overcompensating with fluoride or oral hygiene.

(36:53): Jordan Sexton: "Does drinking green tea provide healing or any benefits?"

(36:59): Dr. Katharine Ciarrocca: I mentioned the product line MighTeaFlow. I have nothing to do with them; I just am aware of the product and have actually studied the product. What they did was take a component of green tea and supersaturate it to the point that ultimately, it's really, really concentrated in these lozenges and it has anti-inflammatory effects. So I've had patients say, "What if I don't like the lozenges, but I just want to drink a lot of green tea?" The amount of green tea you'd have to drink to compensate or to compare with those lozenges would be excessive. Green tea has wonderful anti-inflammatory and health benefits, so I'm never going to discourage someone from drinking it. I just don't know how much you would need to drink to have it affect your oral GVHD.

(38:00): Jordan Sexton: One person would like to know “should they be using fluoride treatments at home to protect their teeth from decay, since GVHD increases their risk for cavities?”

(38:11): Dr. Katharine Ciarrocca: You can, depending on your level of oral dryness, depending on how well you take care of your teeth. I'm obviously not looking at anybody's mouths today. But sometimes it's as simple as buying an over-the-counter fluoride mouth rinse like ACT Mouth Rinse, like what kids use, and do that before bed. But if you have severe dryness and it's difficult for you to keep your teeth clean for whatever reason, then that's when we turn to the prescription-strength fluorides. There are gels that you can be prescribed. There's actually a toothpaste that is a high concentration of fluoride and that's, in my opinion, very easy to use because you simply substitute that out for your normal toothpaste.

(39:06): Just because you have oral GVHD doesn't mean you have to be on a fluoride supplement, but know that there are products out there, from over-the-counter products that work like a rinse, to the prescription products. And that would be something I would work with your dentist on, talk to your dentist about. If you're having an increase in the amount of cavities that you're getting, then you absolutely should go on a fluoride supplement.

(39:40): Jordan Sexton: "What are some factors that need to be considered to address the loss of a tooth when one has oral GVHD that has been well managed?"

(39:50): Dr. Katharine Ciarrocca: Loss of a tooth depends on what that's from. It can be from gum disease, or it can be from a cavity. Ideally you replace the tooth in some way or another, whether it be through an implant or a partial denture. That would be something that you would need to discuss with your dentist, what is the best way to address that. But GVHD itself does not preclude you from having an implant placed. That may be something that you could have done. It's not going to affect your healing, but there are other things that could ultimately affect your ability to have an implant placed. Having a partial denture to replace something, that comes in and out to replace that tooth, if you have chronic oral lesions related to oral GVHD, you may notice that if the denture does not fit properly, it will cause trauma to your tissues, which will then further worsen the GVHD. I hope that answered your question.

(41:26): Jordan Sexton: We'll follow up if it didn't, but it sounded comprehensive to me. One person has used a night guard for many years. "Does it make sense that the night guard could be causing irritation on the buccal surfaces due to any contact or rubbing during the night?"

(41:50): Dr. Katharine Ciarrocca: It can, absolutely. Having a night guard helps minimize it because it should be kind of smooth, and smooth out your teeth. But where your teeth meet, that line where teeth meet, on the buccal mucosa, tends to be traumatized easily. Wearing a night guard, making sure it's smooth and polished and clean, can help tremendously in decreasing any irritation in that area. Sometimes I will even have patients cover their teeth if there is an area where they continually traumatize, cover it with a night guard of some sort. So as with anything that's in the mouth routinely, you have to be cognizant of its smoothness and its fit.

(42:48): Jordan Sexton: "Is there any probiotic strategy in managing oral GVHD?"

(42:54): Dr. Katharine Ciarrocca: Not that I'm aware of. And that is something that could be under investigation currently, but there's nothing that I know of off the top of my head regarding probiotics that could help with oral GVHD.

(43:16): Jordan Sexton: "What dietary modifications would you recommend to minimize discomfort with oral GVHD?"

(43:24): Dr. Katharine Ciarrocca: When you have a chance to go back and read my slides or review them, there is a list of commonly known oral irritants, and this is the same list I give to anyone who gets chronic oral lesions. So think acidic or citrusy foods, spicy foods, foods that have alcohol, or drinks that have alcohol in them. Certain spices like cinnamon tend to be irritating, mint tends to be irritating. There are certain components to oral hygiene products that can be irritating. But I've had some patients that can't eat dark chocolate, and some who can't tolerate garlic or onions. But then I have others who can eat something like pineapple, which is very acidic and can be irritating.

(44:24): Depending on the severity of your lesions, it certainly would be somewhat of a trial-and-error type of thing. I think if you don't have a hankering to eat something, your body tells you that. Your body is trying to say, "I have no interest in eating something super spicy." But then I also have patients who come in and say, "My goal is to be able to eat spicy salsa." That could be a very lofty goal between the tomatoes and the spice, but oftentimes we can get the lesions and irritation under control enough that they can enjoy that without causing a huge flare.

(45:17): Jordan Sexton: This one is a bit of a longer question.

(45:20): Dr. Katharine Ciarrocca: Okay.

(45:21): Jordan Sexton: This person is requesting some help managing their oral GVHD. They're 65 years old, three years post-transplant with both oral and ocular GVHD, and also previously a head and neck cancer patient/survivor. They are currently dealing with what they consider to be moderately a case of both. They've had multiple endoscopies, one full and two that were just the upper, with the last one being about five weeks ago. They've asked their doctor if they could maybe diaphragm or balloon their throat. Unfortunately they said that wasn't necessary, but they say they can only eat soft foods and occasionally use Miracle Mouthwash to eat more dry foods. “Is there anything, in your opinion, that might be able to help give them some relief from this?” They're also taking pilocarpine, again with little to no relief, and they appreciate your feedback.

(46:21): Dr. Katharine Ciarrocca: This is where my two worlds collide, the bone marrow transplant group and the oral cancer, or head and neck cancer, group, and it always makes things a challenge to manage. The first part of that talks about having difficulty swallowing. I'm not sure if you've seen someone who can help, a speech and swallow pathologist. They're absolutely wonderful, and if you can find one who has worked with someone who's had head and neck cancer, I think that's a really great first step. I also think that if it's able to be demonstrated that you have had some constriction of your esophagus, that a balloon or a stretching procedure absolutely can help. Even if it gives you a few millimeters, it can help with being able to swallow properly.

(47:30): Swallowing is a complex thing that we do, a complex function that we have. It has many moving parts, so it's not just the width of the tube of your throat that determines whether you can swallow. If that's constricted, that can be an issue. If your muscles are weak, that can be an issue, and if you don't have enough saliva, that can be an issue. Add on top of that, trying to eat dry foods and you don't have enough lubrication. It is a multidisciplinary effort to try to get better swallowing.

(48:14): Pilocarpine does come in a few different dosages, so that would be one thing I would look into to be sure that you're on. Try going up a bit in the dosing. The other option is to switch it to cevimeline, which is Evoxac, which is a later generation of this particular medication that's more specific to salivary glands. And then if your issue is eating and having enough saliva to eat, taking it very specifically, like 15 minutes before you eat, so it has a chance to really prime those spit glands. That can help. And then using an oral lubricant while you eat, any sort of gel or spray, that can help essentially replace the saliva you're missing and the lubricating effects that saliva has.

(49:18): There is a medical device that's prescription only. It's called Aquoral, and you can get it on their website. I often will combine this. It's an oral lubricant, oral moisturizer, and it gives up to six hours of oral moisture. I think taking pilocarpine or cevimeline and then also using this oral moisturizer can help tremendously. That was a long question, but I think I gave an even longer answer.

(50:03): Jordan Sexton: One person has a ridge on the buccal mucosa at the hinge point where the top and bottom teeth meet. “Will this ever go away? And if so, how do they treat it?”

(50:14): Dr. Katharine Ciarrocca: It will not. We call that a linea alba, which is a white line. That's what linea alba means. (You’ve got to have elaborate terms for things.) I have linea alba. It comes from your teeth meeting together and essentially causing a callus on your teeth. So if you're a grinder . . .  I am, I wear a night guard, but I still have two, one on each side.

(50:49): Sometimes it can become so large that patients will chew on it, like a habit. That will only make it worse, that will irritate it, but it doesn't normally go away unless whatever is causing it also decreases. I know that with mine, it's much less significant now that I do wear a night guard, but that's what the cause of it is.

(51:23): Jordan Sexton: And we have two last questions. We're cruising through these.

(51:27): Dr. Katharine Ciarrocca: Okay.

(51:28): Jordan Sexton: "Is there a connection to dry mouth from GVHD and congestion or cough?"

(51:37): Dr. Katharine Ciarrocca: That's a great question. I don't know about congestion so much because it's not necessarily in the mouth, but I would think that the glands that secrete the mucus production would be affected the same way. As far as a cough or kind of a choking feeling, that's a very common complaint among dry mouth patients. We make two kinds of saliva, a thin runny saliva and a thicker mucusy saliva. And depending on the different salivary or spit glands we have, they make different percentages of these. But what we do know is the very first type of saliva to go away, whether it be from medications, radiation, GVHD, any sort of reason, is that thin runny saliva. So you have some moisture in your mouth, but it's mostly that mucusy, thicker, frothier, stringier saliva and it gets stuck in your throat and it just doesn't work quite as well.

(52:53): It is a very common complaint of people feeling like they get stuff stuck in their throat, that they choke on their own spit and oftentimes if it's severe enough, I will recommend patients take Mucinex, which helps thin out secretions, if you're able to take that with any other health problems that you have. That's an over-the-counter remedy that can help thin out your secretions. And then all of the other tips and tricks I give as far as maintaining hydration and all of those things, will help with that sensation.

(53:32): Jordan Sexton: One person has the typical dry mouth issues, and they're controlling that, they're managing it, but they are six months post-allo and are noticing difficulty swallowing air with liquids. “They're assuming this is due to weak muscles and are wondering if you think a swallow study might be in order?”

(53:51): Dr. Katharine Ciarrocca: Well, it's hard to make recommendations like that, but I certainly think that would be helpful if you're swallowing liquids. Liquids should be something that you can swallow easily, regardless, as opposed to like you're trying to eat Saltines and you can't swallow them. That I would attribute more to not having enough saliva. If you're able to swallow liquids but feel like you're having trouble with it, I would definitely have yourself checked for muscle weakness. And that's with a swallow study.

(54:33): Jordan Sexton: We are at time for our last question and it happens to be our last submitted question. So excellent job, cruising through these, very efficient in responses. This person is wondering, and I think we know through the presentation, “if they are at increased risk for oral cancer due to GVHD, how often should they have oral cancer screenings?”

(55:01): Dr. Katharine Ciarrocca: Great question. I would say everyone should have an oral cancer screening, no matter what your health history is, at least twice a year. You need to first and foremost make sure your dentist is taking a look around and moving your tongue around, et cetera. If you have oral GVHD, it depends on how well it's controlled.

(55:20): If you have really chronic and frequently irritated tissues, I would say every four to six months you have someone take a look at it. And going back to what I said, if you have a flare and you just can't get it under control, or you have an area that's really stubborn and just not healing, that buys you a trip to see someone to take a look at it. But if we can get a good level of control, then I would say once a year could be a possibility. That's what we aspire to. Knowing that, you're also following with your bone marrow transplant providers who will also probably look in your mouth. It is a team effort. That would be my recommendation.

(56:23): Jordan Sexton: Closing.  That is fantastic. I think we managed to answer all the questions, so thank you very much, Dr. Ciarrocca, on behalf of BMT InfoNet and our partners. It's been a very helpful presentation. And thank you to everybody who attended, and the audience for your excellent questions. Please contact BMT InfoNet if we can help you in any way.