Featuring Jacqueline W. Mays, DDS, MHSc, PhD, Chief, Oral Immunobiology Unit, National Institutes of Health and Cathy Spence, a patient.
Jacqueline W. Mays, DDS, MHSc, PhD
Lasker Clinical Research Scholar
Chief, Oral Immunobiology Unit
I have had the great privilege of working with transplant patients in the NIH dental clinic for nearly the past decade, and through that time, you all have taught me so much not only about GVHD but about how resilient the human spirit is as you trek through the long – in some cases very long- journey before I see you – sometimes before transplant and more often, long after transplant through one of our cGVHD research programs. I am also acutely aware that we don’t have great treatment options in many cases, and one of the privileges of being at the NIH is that I also run a research lab where we are focused on understanding how GVHD works in the mouth and on finding new treatments.
Today, we are going to walk through what to do before transplant, what you can expect early and later after transplant, things that you can do to take care of your mouth
Everyone’s experience is unique. Peggy was kind enough to share some of your pre-submitted questions, and I have tried to incorporate this information in the seminar. Of course, you are welcome to ask questions at the end – particularly if I am not clear or if you want more detail on a specific topic.
The Cliff Notes:
Oral “to dos” pre-transplant
See your dentist. Ideally, you would be able to see your community dentist. If your cancer center offers dental care, it might be a good time to establish a relationship with that clinic.
Before transplant, there is a lot going on, often within a very short timeframe.
Dental clearance is still an important part of keeping you healthy through your transplant and long after you have engrafted.
What are we looking for during a pre-transplant dental clearance?
Special care of the mouth needed as a cancer patient
Finding Community Dental Care (a dentist!)
Your Mouth After Transplant
Early: (first 100 days) mucositis, dry mouth – this may be from pre-transplant radiation, oral thrush – this is overgrowth of yeast in your mouth that is common with immunosupression
Overlap: drug-induced complications (oral side effects from methotrexate, sirolimus), viruses (like herpes simplex virus or CMV)
After 60 days:
Symptoms of GVHD – many of you listening on this call can describe these better than can I.
Oral GVHD is really 3 distinct conditions: oral mucosal disease, salivary dysfunction and limited mouth opening. These can occur together in the same individual (less than 1% of patients!) or separately. The important thing to remember is that different clinical situations may need different treatment.
If we see white lacy changes on the inside of your mouth and there is no suspicion that it could be caused by something else (infection or medications), then we can diagnose oral GVHD in the clinic. We may need to biopsy the inside of your cheek to confidently diagnose oral GVHD, and a small biopsy is the only way we can diagnose GVHD in the salivary gland.
Important questions to ask in the clinic include:
Like all cGVHD, there is a difference in scale. The mouth might be the only site affected, and it could be quite mild. If you have bothersome symptoms or if your mouth is dry, you need medication and supportive care.
So, you have oral GVHD – what next?
If the soft tissues of your mouth or the oral mucosa are affected, it can be difficult to eat and possibly to talk. Try to find something nutritious that you can eat. Soft foods like yogurt, mashed potatoes, overcooked carrots, smoothies, anything blended, TV dinner meats, popsicles or frozen smoothies or yogurt; protein drinks like ensure, peanut butter or other nut butters, soft breads (think wonder bread). Drink room-temperature water while eating and try to stay hydrated otherwise. Ask a nutritionist at your cancer center for help.
Numbing your mouth before eating can help you get some calories in if eating is very painful. You can use viscous lidocaine or magic mouth wash (lidobenalox) – both are prescriptions – for 30 seconds before eating. Swish then spit them out and eat. This is a short-acting anesthetic. This can be used before using other oral rinses that may be painful (burn or hurt) while your mouth is very raw.
We start treating oral GVHD with dexamethasone rinse. This can be compounded at higher strengths. This is held in the mouth for at least 2 minutes, then spit out. Longer contact time lets more drug soak into your soft tissues. Progressively stronger steroid rinses can be compounded (clobetasol).
With isolated lesions, we recommend applying a gel – either a steroid gel or – if it is on the external lips – a non-steroid gel like tacrolimus.
If topical treatments are not effective and oral GVHD is severe, then systemic therapy may need to be increased, changed or added. Steroid pulses, ECP and some other drugs have shown major positive impact on oral cGCHD.
Mouth opening problems are usually related to severe skin GVHD and get worse as the fibrosis around the mouth progress. You can counteract this to some degree by doing daily stretching exercises for the mouth and applying topical steroids or other creams around the mouth. If the mouth opening is very affected, it may require surgery to open up the tissues.
Salivary gland GVHD is silent – it is not always clear what causes dry mouth after transplant – drugs, GVHD, dehydration etc. – and sometimes it is not recognized until the salivary glands are almost completely fibrotic and have irreversibly lost their structure.
What can you do?
There are a lot of dry-mouth products on the market. You may need to try a few before you find one that helps – they are just lubricating agents for your mouth that keep you more comfortable. Ask your dentist for samples of different kinds!
Paying for dental care is a major challenge. I work at a free clinic and working the social safety net is not my strong suit. These resources vary a lot by region. A local social worker at your cancer center could hopefully help you find local resources. Often, a local dental school (there are one or two in most states) will have a resident clinic that has reduced fees, with fully licensed dentists performing the treatment.
My GVHD of my cheeks has cleared up but I am facing dental issues
How common is progressive periodontal disease and eventual tooth loss post-transplant? Is it from GvHD or from the extreme Chemotherapy (or both)?
Right now, just curious I am 10 years out…have extreme sensitivity to both hot and cold.
How best to care for mouth and gums when doctor says you cannot go to dentist yet.
What if you have a tooth ache what do you do
Revlimid (lenalidomide), pomalidomide and other thalidomide-derived drugs are not related to bone loss or dental issues. We have seen some modest improvement in oral GVHD with patients on pomalidomide
How to get rid of ongoing tongue ulcers?
I have GVHD of my lower lip. It is raw & bleeds I tried several creams prescribed by my dermatologist & oncologist to no avail.
Cathy Spence- Survivor
Cathy discussed the challenges of getting her transplant in Canada and how a fellow transplant patient helped advocate for her to come to the states for her care. Dental care is apparently not part of the universal health coverage in Canada.
She shared how she received a dental check up before her transplant and they took out her wisdom teeth as they were more likely to cause issues.
Her platelets were quite low during her transplant, so she used a special sponge-like lollipop brush to prevent bleeding when she “brushed”.
She did a great deal of swishing and spitting of a special mouth wash to avoid infection.
She did end up getting Mucositis which was painful and had her off food for about 10days.
She followed all the post-transplant care Dr. Mays suggested.
About 6 months after transplant, she developed cGVHD of the mouth. She had low saliva, an unusual coating, and taste changes. and it helped to take frequent sips of water and to take sips of water with food. She avoided citrus and spicy foods. She brushed after each meal and used tooth sticks to clean in between. She ended up needing a gum graft as her gums had receded. She also found some help with gum stretch exercises. Dexamethasone swishes were also helpful.
She tried two meds to try to increase saliva, but she did not like the side effects. Ultimately, she went on Jakafi which helped her other cGvHD symptoms more.
Cathy encouraged others to be aware of the choices they have in their care, to network and educate yourself, and to get support.
We acknowledge and thank the following Link Partners for their ongoing support.
• The Leukemia & Lymphoma Society
• Incyte Corporation
• Pharmacyclics & Janssen