Articles, Blog

Your Mouth and Chronic Graft-vs-Host Disease (GVHD)

August 29, 2019

– [Doctor Treister] So
I never know sort of who here’s a patient,
who’s a family member, who might be a caregiver
or actually a provider, but I assume everyone
knows that they’re here for the mouth, the oral
graft-versus-host disease, oral health session. So I’ll try and make this
sort of as interesting and relevant for everyone here. This will not be a really
high-level, technical talk like I would give if it
was a roomful of providers. But even then, I always
try and make things as sort of tangible and
understandable as possible. I also don’t want to talk about anything that’s going to make anyone
too upset or be scary. But at the same time, I do want to talk about some of the real
things that can happen and some of the things
that we can actually do to hopefully prevent or
minimize complications, especially as time goes on. First and foremost, and I’ll show you this in the next slide, the mouth is one of the most commonly affected sites with graft-versus-host disease. So anyone in this room who’s experienced or is experiencing
graft-versus-host disease, it’s very common, very
likely that the mouth has been affected to some extent. It might be the first
place where it presents. It may persist when other areas
tend to sort of quiet down or respond to other treatments. And it also may be an area that persists for years afterwards,
even when somebody’s able to be taken off systemic
immunosuppression. So I’ve got some patients
that I’m following, 15, even 20 years after transplant that still have active-enough disease that we have to actively treat it. It’s symptomatic without management. Like graft-versus-host disease affecting any part of the body, there’s not sort of a one-size package. Somebody who has graft-versus-host disease of the eyes, some of you will hear about, or graft-versus-host disease of the skin. Everybody doesn’t
experience the same thing. In some cases, it might be something that sort of, it’s there. Doctors noticed it or
patients noticed something feels a little bit different in the mouth. But for the most part,
they’re able to eat, drink, do everything, have a normal life. Other patients, it can be so debilitating that there’s significant weight loss, significant reduction in quality of life, just because things as simple as being able to drink water
actually becomes uncomfortable. The lichenoid inflammation, this term, if any of you have heard, is a term that we use to describe
sort of the most typical pattern of inflammation that
we see clinically in the mouth. But also, it’s used to
describe inflammation patterns on the skin. I don’t remember, someone
who’s talking about genital mucosa, but especially,
well, men and women, the same type of pattern that
we can see on that tissue. So it has, in the mouth,
this sort of very distinct sort of red and white
type of pattern to it, and in particular the white pattern that most people are aware of, it’s actually considered
a diagnostic criteria. We see somebody with these
very characteristic features on the mouth, which I’ll show you, we can actually make a diagnosis of graft-versus-host
disease based on that alone. The lips are very often affected. And I point that out
here in this first slide, just because with
graft-versus-host disease, the lips are really sort
of part of the mouth, much more than part of the skin. It’s sort of this area where we sort of leave the mouth and get to skin. But interestingly, it tends to be active in association with the mouth, whereas it may sort of stop
right at the edge of the lips, and the skin of the face
may not be affected at all. And we’ll talk a little bit about that and how we manage it. Dry mouth is another
really important feature of graft-versus-host disease and how it affects the
mouth and oral cavity. So the salivary glands we don’t see, we sort of take for granted,
I think, most of the time. But we have major salivary glands that are here in the cheek,
underneath the mandible, as well, sort of under the tongue. And these get targeted by the
graft-versus-host disease. Actually, very similar to the way that the glands of the
eyes can be targeted. And it causes basically
changes in the saliva but also decreased saliva. And this can cause some
significant problems in the mouth, in particular increasing
the risk of cavities. So I’m sort of laying the groundwork for a lot of things that we’ll talk about more specifically in just a minute. But this is obviously an important area where we can actually do a lot to help prevent
complications and eventually prevent tooth loss. And then finally, and this is something that I never want to put
too much emphasis on, but it is important to be aware of. Anyone who has any
involvement with a patient with graft-versus-host
disease in the mouth, really anybody who’s managing dealing with a patient who has any history of graft-versus-host
disease is, unfortunately, there is this increased risk of cancer just related to the history of the graft-versus-host disease, the treatments for the
graft-versus-host disease, and the mouth is one of
the most high-risk sites. So what that means is that this is still a very low-risk event
from the standpoint of, anyone who’s gone through transplant, even someone who’s had very
active graft-versus-host disease in the mouth, the likelihood of developing cancer is still very low. But compared to the general population, it’s actually very high. It’s just that when you have risks that are very low, the relative risk, sometimes it’s hard to sort of reconcile in someone’s head. So nobody should consider
that they’re very high risk for cancer, but again, it’s something that we always want to be aware of so that if there’s
changes, we can actually identify and do something early. So I mentioned that the mouth is one of the most common sites. This is data that’s been
reported for many years now. There’s actually updated data, as well. But it really hasn’t changed at all. So I like to refer back
to more classic work. And what this shows is the areas of involvement
and the proportion of patients with involvement. And what you can see is that, like I said before, skin and mouth are the two most frequently affected. And these are upwards in
80 to 90% of patients, so really very common. And then as we get to other areas, they tend to be sort of
less frequently affected, although again, in a large population of patients with
graft-versus-host disease, we see a combination of all
these areas being affected. So with the mouth, and similar to the way graft-versus-host disease
is really anywhere in the body, it resembles other diseases that we otherwise see. So in my non-transplant,
non-cancer population, I see patients with a
condition called lichen planus, which is very common. And it really looks almost identical to the way chronic
graft-versus-host disease will look in the mouth, with this pattern of lichenoid inflammation. So I talked about these
white sort of lacy changes. Oftentimes red changes, as well. And then this is all ulceration. Ulcers tend to be very painful. So some of you may be
familiar with a canker sore, a tiny little, maybe the size of the back of a pencil eraser. And that can cause
really significant pain. Imagine, this is all ulceration. So it can potentially be a
very uncomfortable condition. Sjogren syndrome, it’s
an autoimmune condition that affects the salivary glands and the glands of the
eyes, the lacrimal glands. Again, in the context of this, we see a condition that
almost exactly resembles it. And then scleroderma, again, potentially very serious
autoimmune condition that also can have the
same type of effects with graft-versus-host
disease affecting the skin, the tissues sort of under the skin, but sometimes the skin
around the face and the neck and sometimes even inside the mouth we see that same type of
tightening and fibrosis. Not very common, but I will
talk about it a little bit towards the end. So with all the potential ways in which the mouth can be affected, it can have potentially a quite profound impact on quality of life. Simple things like being able to eat, eat comfortably, drink, brush your teeth, just basic activities where it can impact. And importantly, the mouth oftentimes not only may not respond as
well to systemic therapies as other areas might, but really it just responds very well to more
local sort of focused, localized therapies. So whenever possible, we really try to take advantage of the various treatment modalities that we have. These are just some clinical images, just to sort of orient everybody again. So here, again, we see these typical white, lacy changes. In some cases, it can
get actually quite thick. It almost looks like it’s
a plaque-like formation. You can see how the lips are
very prominently affected here. But really just to the edges of the lips. And how sites are affected
can vary tremendously. So I may see one patient, and they have very prominent involvement of the palette. I may see another patient that has very prominent involvement of the cheeks but no involvement of the palette. And we really don’t, we have no idea why one area gets targeted
more than another. Another common feature,
which I’ll talk about a little bit when I talk
about the salivary gland component, are these mucoceles, or little sort of spit bubbles that’ll pop up on the roof of the mouth. Any of you that have
experienced this condition have probably experienced
this to some extent. This is related to minor
salivary gland tissue that’s actually all throughout the mouth. And these can get sort of plugged and inflamed and cause these little blisters of saliva. They don’t actually
tend to be very painful, but they can be pretty alarming when they’re all over the place. Again, we saw this in the other picture, but another example where we have this sort of focal area of ulceration in the cheek, or what we
call the buccal mucosa. And then surrounded by
these very prominent red and white changes. And again, just, you can
see very similar involvement with the tongue, but also the lips. I’ve almost said this, I
think, verbatim already. But I like to include this quote because it was written in the early days when some of the first literature was first coming out describing graft-versus-host disease in detail. And this was from the group in Seattle. Doctor Schubert is an
oral medicine specialist, someone I’ve known for many years, and still sees patients there. But they said, “while oral
lesions are most common “in patients with extensive chronic GVHD,” so that means where many
areas tend to be affected, not just one area, “patients in our “and other centers have been described “to have limited disease
involving only the oral cavity. “In addition, we’ve noted
that the oral cavity “can be the site of persistent activity “after resolution of chronic GVHD “affecting other sites.” So it really can be sort of the first, the middle, and the last
area of involvement. And sometimes it might be
the only area of involvement. I know you have handouts. I’m not going to go through
this in a lot of detail. This was a figure that we had published a few years ago in this review article. But we can sort of think of it, as I’ve already outlined, we can sort of think of the disease in the mouth as three different diseases. One is the disease affecting the mucosa, and the primary symptom
of that tends to be what we call sensitivity. So even with one of these
mouths that I showed you that looked like they would have to be incredibly painful, if it were me, I would actually be fine right now talking if my mouth weren’t dry. But I wouldn’t necessarily
have a dry mouth just because of the inflammation. But as soon as I went to have breakfast, I tried to eat those potatoes, I’d probably go from being
as comfortable as possible to tears coming out of my eyes, just because of the texture,
let alone the flavor, the little bit of spice, and things that we would never even
think would bother somebody immediately can become something that they just can’t even tolerate. So the idea of going out to dinner, let alone having someone
else cook for you, going to somebody’s house for a dinner, ends up becoming very difficult. With the salivary gland disease, it’s much more the dry mouth, the problem with increased
risk of cavities. With a dry mouth, there’s
also increased risk of recurrent yeast
infections in the mouth. And I think many of you know
that’s a common complication, also related to just
systemic immunosuppression. But some of the symptoms can be similar. So sometimes when somebody
just has a very dry mouth, the mouth can actually
become very sensitive, even though we don’t see
the typical lichenoids or lacy inflammation patterns. And then with the sclerotic,
or the scleroderma form, this is generally tightness,
difficulty opening the mouth, difficulty being able
to just do normal things like brush or receive dental care. In rare cases, I’ve seen patients, for similar, we can see with the skin, where there can actually be sort of deep inflammation into the muscle and chronic spasm of muscles, which can be very painful. But again, this is not very common. So with the mucosal disease, again, that lichenoid pattern of inflammation is really classic. The cheeks and the tongue are most common, lips are really frequently affected. Again, the sensitivity tends
to be the main feature. This affects eating and
drinking, in particular, tooth brushing. Simply using a children’s toothpaste rather than an adult toothpaste for most patients is enough
to make things comfortable. So as long as there’s not a minty flavor or any sort of real strong flavor. There’s also adult formulated toothpaste, like the Biotin toothpaste,
some of the Tom’s toothpaste, they can also be tolerated well. In some cases, some patients may note that the mouth seems tighter than normal. May seem like they can’t open it. It’s not because there’s
the sclerotic changes like we talked about, but
simply those white changes actually make the tissue
thicker than normal. And so it actually will
restrict opening a little bit. And simply by treating the mouth, if we can treat
effectively, it can actually treat that very well. So for managing the
mouth, topical steroids, just like the way we treat the skin with topical steroids,
tends to be very effective. We can use gels, and we can use solutions. In most cases, especially for the cases I showed you, we would
tend to use solutions, just because they’re
easier to treat the mouth. You can put it in, you know, just put it all in your mouth, swish around everywhere. We generally recommend
upwards of five minutes of swishing, ’cause the contact
time is really important. Otherwise, it’s just
going on for a minute, and then it gets washed away. And then whatever saliva the patient has basically washes everything else away. The solution that we typically start with, and I think it’s used most widely throughout this country,
is called dexamethasone. Dexamethasone, it’s not actually approved for topical use. So this is a steroid that’s provided in the solution form so that somebody who otherwise can’t swallow pills, for example little children, can swallow this nicely flavored medicine. And we repurposed that as a topical agent. Works very well, it’s widely available. So basically no matter
where somebody lives, it’s very easy to get from the pharmacy. It works well for most patients,
but not for all patients. So sometimes we have to
go to these other agents that I have in italics. I have them in italics because
they require compounding. These are not commercially available. I can’t just prescribe
clobetasol as an oral solution for somebody. But again, for any of
you that are familiar with some of these names,
or treated skin disease, we use generally the same medications for different areas. For the skin, we have many
formulations of clobetasol. For the mouth, all we
have are, for example, a gel formulation, which we can use to treat one area focally. Sometimes I’ll use gauze to maybe treat an ulcer very specifically. But even that is usually in combination with doing a rinse, as well. Tacrolimus is also available topically. There’s a commercial
formulation called Protopic. Some of you, again, may
be familiar with this if you’ve treated the skin. And we’ll use that to treat
the lips very effectively. The lips are an area that we try to avoid using topical
steroids extensively on because it can cause
irreversible thinning. And the lips are obviously an
area that’s very sensitive. That can be a problem with the skin. Fortunately it’s not
something we typically see in the mouth. So we can actually treat the mouth as aggressively as we need to for extended periods of time. On occasion, we’ll actually have this compounded into a solution, as well. And then the last thing to mention is what we call intralesional
steroid therapy. And this is actually what we see here. This is actually injecting
an injectable steroid directly into the area
where the inflammation is. And you can imagine, going back to here, imagine if all the patient’s symptoms, in this case, were really focused here. Intralesional steroid therapy, if this is an area in particular that hasn’t otherwise responded well to at least several weeks of
intensive topical treatment, can work very, very well. So basically, the idea is I’m injecting just next to this ulcer,
delivering the steroid right to the area. And I have many patients
that just require this on an ongoing basis, but
manages the condition very well. And so these are some examples of treatment, before and after. Here’s somebody before
they’ve started doing rinses, after doing the rinses. They had a sense of
tightness, some discomfort. Now their symptoms are
significantly improved. Similarly, you can imagine this lip would be very uncomfortable anytime anything’s touching it. And this is after a few weeks of treatment with topical tacrolimus. And you can see how well it can respond. Really the primary
complication that we see when we’re treating the mouth, especially using topical steroids, is the risk of developing
a secondary yeast infection or thrush, candidiasis. Use of a topical steroid
increases the risk because it locally
suppresses the immune system in the mouth. Patients who are also on systemic
immunosuppressive therapy, it’s sort of an additive effect. So they’re already at risk to some extent. And then if the salivary
glands aren’t functioning completely normally, it’s potentially another contributing factor. So this is a fairly common complication, but one that we can
actually treat very easily, in most cases actually
prevent from developing once it’s happened. Candidiasis, I mentioned these already. The other potential risk factor is if somebody has a removable denture. That can also contribute to the risk of the infection coming back. So disinfecting the
denture on a regular basis can be very important, making
sure that it’s out at night. Management is with antifungal therapy. We have topical and systemic agents. I tend to favor systemic agents. There’s always some
potential interactions, depending on what systemic
medication somebody’s on. But especially with fluconazole, which is the most commonly used systemic antifungal agent, that
risk is relatively small. And it’s something that we can monitor. For the prevention, in most cases I can have somebody on a once-a-week dose, sometimes twice a week. And that once- or twice-a-week dose will not typically have
a significant impact on interacting with other medications. But it can be very effective in keeping the infection from coming back. And this is something that,
once I’ve had a patient who’s had thrush come
back a couple of times, will pretty much go to a prophylaxis. The other infection that’s fairly common in patients after transplant
is herpes simplex virus. So this, herpes cold sores that I think most people are aware of, the primary risk factor
is immunosuppression. So most patients, even
fairly young patients, this is an infection that most people are exposed to in childhood,
teenage, early adulthood. By the time we’re 50, 60 years old, the overwhelming majority
of the population has been exposed to this virus. Once you’re exposed, you have it forever. It can reactivate under
certain conditions. Usually stress, but in
particular suppression of the immune system. And important to remember that for somebody who’s taking
their acyclovir regularly, which is supposed to suppress this, we can still, if there’s
enough suppression otherwise, get what’s called a
breakthrough infection. So you’re taking the medicine, but you still develop an infection. So we have to go up to a
higher dose of medication or potentially change the medication. And so it’s not always the
easiest diagnosis to make, especially when somebody has generalized graft-versus-host disease changes. But if somebody develops
fairly acute onset, really, really painful symptoms, especially just painful at rest, there’s a little ulcer here, there’s an ulcer here, it probably looks very subtle to you, but very painful for this patient. And also, this sort of
funny, irregular ulcer here, on the inner aspect of the lip, without sort of any typical associated white changes, like we
talked about before. Salivary gland disease, so the important thing to realize is that saliva isn’t purely just water. I think we tend to think of it that way. It feels like a wetness in our mouth. But saliva, and I’m not
going to go through this. You have this in your slides. It’s somewhat of a technical table. But it talks about all
the various properties and the components of the saliva. So it provides lubrication,
it has antimicrobial, it actually controls bacteria
and fungus in the mouth. There’s growth factors, various proteins in the saliva that we don’t
even really understand exactly what it does. Plays a role in sort of
maintaining mucosal integrity. Plays, actually, an important role in maintaining the health of the teeth. Has, you recall, buffering capacities and actually remineralization. So just like bone, the teeth are sort of in this constant flux of being broken down and built back up. And importantly, like I mentioned earlier, there’s potentially not just that there’s not enough saliva, but the composition is changed. So in some cases a patient
may not even notice that the mouth feels dry, and yet over a period of time, we may actually start to see changes where we can see that there’s cavities developing. Typical symptoms, though,
are going to be dry mouth, some discomfort, sometimes difficulty eating and swallowing, just because saliva plays an important role in being able to sort of chew
up food and swallow food. But what I’ll show you in the next slide, and what we’re most concerned about is the risk of caries,
dental cavities developing. And they tend to follow a
fairly distinct pattern. Areas where food and debris
would tend to collect, like along the gum lines
and in between the teeth, and then again, this
is an important factor for recurrent yeast
infections in the mouth. So what you see here
is very early changes. But you can see it has
this almost like a frosted appearance along the gum line. And this is what
demineralization looks like. So even though there aren’t
actual cavities formed at this point, the hard tissue is actually very undermined. And this is after just not a very long, unfortunately, period of time, where we can see the progression of this to the actual cavity. And cavities will tend to have this sort of yellowish,
brownish appearance. And with an instrument,
this would be very soft. And then this is, again, typical pattern. These are more advanced
cavities at this point. But this is very typical pattern of along the gum line, and
with almost all the teeth being affected. So obviously we want
to be able to intervene at a point before this. But even if it’s at this point, it’s still a time at which, as long as the teeth are salvageable, we want to be aggressive and go in there and treat the teeth and try and prevent any further advancement. So we have ways to treat
the salivary gland disease from sort of a symptomatic standpoint. There’s actually some
medications that can help stimulate the saliva. But making sure that
there’s just good hydration, things like just sugar-free chewing gum or candy can help just
keep the saliva flowing. Brushing and flossing, having a diet that doesn’t promote
dental caries is important, avoiding sugary foods, sticky foods. Use of fluoride, both
sometimes being applied at the office, something
like fluoride varnish, but also prescription fluoride at home. We always struggle a little bit about how much to push this on
all transplant survivors because we know that not every patient’s at the same level of risk. And it’s difficult to keep up with all these sort of preventive
instructions that you’re given. But for somebody who has
significant dry mouth symptoms, any evidence that there
have been changes already with the teeth, we obviously
really reinforce this. Simply seeing the dentist
on a regular basis, bitewing radiographs for screening. So this is a bitewing radiograph. This is, unfortunately, showing
a lot of dental disease. This is all decay that we’re looking at. But we can do these early on, six months, 12 months after transplant. If we actually see someone who’s starting to develop cavities, we
know that this is someone that we need to pay more attention to. This is just one slide,
just to talk briefly about the changes that
can affect the mouth when it becomes sort of tight or fibrosed. So here what you’re looking at is a patient who’s had
previously, actually, very active graft-versus-host
disease in the mouth. They would’ve had sores,
ulcers, like we saw before. Now it’s all resolved. But in the areas where it was very active, there are these very
tight bands of fibrosis. And it’s making opening difficult, and when they open, it sort of pulls in these areas and becomes
very uncomfortable. And so the reduced mouth opening can actually be because of these types of bands forming inside the mouth or because of changes around
the skin, on the outside. And this can lead to
very localized changes around the gums, gums and teeth. We’ve seen some areas of
very severe recession. Sometimes actual sores and ulcers, just due to the actual sort of tightness, but pulling of the tissue. For somebody who potentially
would be wearing a denture, what we call the vestibule
or the gutter space will tend to sort of get lost because the tissue gets tighter. And so it can become very difficult to be able to place dentures. Management is really, it’s challenging. We have some physical
therapy type approaches, sometimes surgical approaches. But fortunately, this is
not a common complication. The last thing I want
to talk about, briefly, which I mentioned in the beginning, is the increased risk
of cancer in the mouth. We know that there’s a
significant association with both chronic
graft-versus-host disease and also specifically chronic
graft-versus-host disease in the mouth. But patients who have not
had chronic graft-versus-host disease in the mouth are
still going to be at risk for potentially developing
cancer in the mouth at some point after transplant. The important thing to understand is this tends to be a late complication, many years after transplant. And as far as we understand, this risk actually never goes down. It just sort of continues to go up. So again, overall, the
risk is still very low. No one should think that they’re high risk for developing cancer in the mouth. But it is something that we have to sort of have our alerts up on. And in most cases, it
should look very different from the way chronic
graft-versus-host disease looks. Even when there’s still active chronic graft-versus-host disease,
there should be something distinct about the changes
that are related to cancer. So here you can see there’s this sort of ill-defined red and white
mass along the tissue. This is very distinct. It’s raised. It has sort of a funny
pattern, texture to it. It’s white, so yeah, you could say graft-versus-host disease looks white. This looks very different. Again, it’s very distinct. Similarly, here, very distinct, deep ulcer with very firm surrounding borders. Graft-versus-host disease, the tissue should always feel soft. There’s not going to be this
firmness around an ulcer. Similarly, here, very, very well-defined ulcerative lesion sort of extending deep into that pocket between
the teeth and the gums, but without any other changes that look like graft-versus-host disease
in the surrounding area. So I’m going to wrap up, and then we’ve got time for questions. As I said, the way we started out, graft-versus-host disease
in the mouth is common, maybe the first place, maybe
the last place of involvement. Wide range of symptoms. We have some fairly standard approaches to management. There’s some very simple things, like avoiding things
that would be bothersome. There’s active treatments for both treating the mucosal disease, as well as for treating the salivary
gland disease and symptoms. The importance of seeing
a dentist regularly, as soon as, ideally, six
months after transplant. Ideally, that is a good time, and it’s important to
return to the dentist, assuming there aren’t
other complicating factors that would keep someone from going. And then the oral cancer surveillance. And I think it’s important
for patients to be aware. So patient knows their
mouth, in most cases, better than anyone else. They know what things feel
like, they know what’s normal. If something just doesn’t seem normal, want to make sure that
they let someone know. These next few slides I’m
not going to go through. I just have this sort of as a resource. These are some of the
more common prescriptions and just, it might be helpful, depending on how and where you’re being managed. This is a table that we just reproduced from our publication that just talks about some of these
potential late complications and some of our recommended guidelines for screening, prevention, and management. And then you’ve probably
seen this slide previously, but there’s a number of other resources, including this book, which I played a role in sort of providing some
review and material for. So this talks about
graft-versus-host disease in the mouth a little bit. There’s some other good resources. And we’ll stop there, and
we have, I think 25 minutes for questions, so. (applause) – [Woman] Thank you, Doctor Treister. And we’re just opening floor to questions. And we ask that you
could speak to the mic, and if you can’t get to the mic, we can bring the mic to you. – [Doctor Treister] So very good question. I try to serve as a
resource, and obviously we try and put materials
together like this and publish materials, and so on. The reality is, is you’re probably aware, most dentists will not know a whole lot about stem cell transplantation. My hope would be that,
especially once they have a patient, that they take that opportunity to spend a little bit of time and seek out some resources. So for example, I believe that paper that I referenced a couple times is, anyone could go to Google it, look it up, and download it, because it’s available open. But I think as long as they have a way to communicate back to
the transplant center and there’s some
information being provided, every center works a
little bit differently. Most centers, unfortunately, don’t have at least as strong of an oral
health resource as we do. But obviously we have resources. We have resources on our website. I would even say someone
could certainly come to our website even just to
look for those resources. But the reality is, for the most part, the dental aspect of things, it’s really the basic principles of
dentistry don’t change because you or somebody’s
had a transplant. Some things may sort of
seem a little bit different, like I haven’t had a patient who’s had this problem with such dry mouth before, and this problem with cavities. But reality is, maybe they have, ’cause I mentioned this
condition Sjogren’s syndrome. It’s a fairly common autoimmune disease. So we do see other, sometimes
there’s other cancer therapies that can result in sort
of a similar situation. So somebody who’s been treated for head and neck cancer, not to
talk about more cancers, but someone who’s had radiation therapy, they oftentimes have, as
similar but even worse complications related
with salivary changes. So it’s a long-winded answer to, that there are resources out there, and I would hope that they understand and sort of seek that
out, and or reach out to look for it. No, it’s not necessary. So there’s no reason to be
replacing metal fillings unless they’re actually breaking down. So anyone who’s heard anything about anything related to, from cancer to I don’t even know what
conditions have been associated. But silver fillings in the mouth are safe. They don’t need to be replaced. Oftentimes they would still
be our filling of choice. The material of choice,
depending on the where and the what of what’s being restored. The other thing I wanted to mention is when it comes to
managing, not the teeth but the actual mucosal disease, the sores, unfortunately that is also an area where most dentists just don’t have, most of them, even just
the basic education and experience in managing
mucosal conditions. Doesn’t mean that they’re not capable. And again, for the most part, most of what we do to manage this, it’s not really, really
high-level, complex medicine. It’s just understanding sort
of how to connect the dots and explain to someone
what to do effectively. So again, I mean, there’s
resources out there. They can be prescribing,
you want to make sure that somebody is hopefully
paying attention. Email, yeah, one thing I would say is I try to make myself as
available as possible, just because there aren’t
that many resources like me. By all means, if somebody
has a way to get ahold of me, I’m happy to receive emails. But also, I make myself available through the BMT Infonet. So probably four or five times a year I get a question that’s directed, come through whatever the portal is to BMT Infonet and then to me. So it’s kind of a nice way of doing it, ’cause I think that way they know, also, that they’re serving as that
clearing house resource, at least. So, it’s a good question. Depending on where you live in Colorado, my guess would be is that, what’s that? (person talking quietly) Yeah, it’s- (person talking quietly) Yeah, it’s- (person talking quietly) You’re probably not
going to find a dentist who specifically, I mean, you’re not going to find someone that
has my type of training, for example, oral medicine training, out in anywhere except for Denver. Even in Denver, there’s one or two people. So there’s not a lot out there. Again, they should be comfortable with the basic management of things, and at least the more basic aspects of managing the dry
mouth aspect of things, and or working together
with the transplant team. So for example, one of the medications, I didn’t, it’s on the list, but I didn’t talk about it specifically when I talked about what
are called sialogogues, but some of you may be aware,
there’s two medications we have available. One is called Pilocarpine, and the other one is called Sibibylene. And these basically
stimulate the salivary glands to produce more saliva. They’re not immunosuppressants. So it’s not like you’re adding on another immunosuppressant medication. It’s just doing a very specific action. Sometimes that could be
prescribed by a dentist. Or it could be prescribed
by a primary care physician, or it could be prescribed
by a transplant physician. Probably more often than not, in the transplant world,
it’s going to be prescribed by the transplant physician, whereas at our center, our team is generally writing those prescriptions. But a dentist can write
a prescription for that. So even as a patient being an advocate, you could say, you know,
I was at this talk, and I’ve heard about this
medication, Pilocarpine. And they would say, oh, yeah, I’ve never even prescribed it before. But seems reasonable,
and let’s give it a try. I mean, there’s nothing that will actually stretch it like that. I mean, obviously basic trick is at least putting some Vaseline to
make it more comfortable. Also, depending on what is being done, the length of the procedure, there’s something called a bite block that can just make it a lot
more comfortable for you. So even if it’s not opening it wider, it’s easier to keep it open for longer. So it’s like just a little
triangular piece of rubber that goes between the teeth
and kind of holds things open. But if it’s really limited and it’s, like for instance, you were able to open a certain amount to eat or do something, and now it’s becoming difficult, there’s some simple sort
of stretching exercises. There’s, sometimes
people do just something as simple as using tongue depressors, Popsicle sticks, and sort of stacking them and adding them in between
to get a certain opening. There are some physical
therapy devices, too. I didn’t go into any detail. We don’t use them very often. But there’s actually devices
that are bioengineered to open the mouth. But again, most of these treatments, we don’t have big studies demonstrating who’s going to benefit,
who’s not going to benefit. So you probably don’t want to hear this, but there’s no substitute for brushing. So if that’s really what
you’re trying to accomplish, and I would say for anyone, I mean, any of my patients,
especially that I really feel are at risk for the dental problems, it’s try to brush after every meal. Even if you’re doing somewhat
of a cursory brushing and you know that you spend longer in the morning and at night,
you’re still doing something. So brushing, there’s no substitute. Other than that, there’s a rinse. If the mouth is really dry
and food tends to collect, then certainly a rinse would be.

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