Hello,

I have heard alot about patient teams. Other than the doctors teams for surgery and reconstruction those are the only ones we've had. No one mentioned a nutrionist, dental team ect. Is it customary for a cancer patient to have a nutrionist and the rest? We are just winging it. I have this strange feeling that in the mad rush for sugery ( which was a great successs) the "team" we should have never appeared. Now I fear that getting a nutritionist ect is going to be a battle with the HMO.
Hope everyone is doing well....Annabel

We saw a nutritionist just one time and that was the day after Dan has his PEG tube put in. I had to find out from other sources about different nutrients and request from the nutritionist changes to be made. There hasn't been much help in that way. Fortunately, from another friend that Dan used to work with is how we found out about PEG tube nutrients with many more calories per can...and this has been covered by insurance...when the BoostPlus that the nutritionist first prescribed was not...go figure. Ask around and ask them many questions...it's how we got more things covered...not because they told us! Before radiation he was told to go to a dentist to check his teeth...no one they suggested or provided. We had to pay $400 for flouride trays the dentist said he needed, and he hasn't even been able to use them...they have gagged him bad everytime he tried. Another waste of money.
Hope this helps!
Debbie

Hi Annabel,
My "team" included a nutritionist that would come to see me during my radiation appointments about once a week. She gave me recipes, etc. My Otolaryncologist, reconstruction doc, radiation doc, dentist, etc. all know each other. Can you call any one of your doctors and see if they can give you better information?

Minnie, did you have physical therapy for the swelling on your face or was that someone else, I can't locate the posting on that, seems like someone mentioned a technique they learned from PT to reduce swelling, is there a certain type of PT I should look for or can any of them do it? Thanks so much!!!!!!!

Carol-

I learned a type of lymph message from my PT a year ago that reduced the swelling while they worked on increasing mobility in my neck. Still had hardness in neck but no swelling. It takes only 2 minutes right before bed every evening and it helps redirect the fluids from the side of my neck disection to the other side to drain.

I just spent another 6 sessions last month as a tune-up and her deep message really softened up the neck area tissue! And it has stayed soft. Call around and ask if there is a pt with experience in lymph message techniques. Well worth the benefits! Good luck! - Kris

Hey Kris, thanks so much, that is what I needed to know, will start calling around tomorrow! Thanks Again, Carol

Annabel,

I had a nutritionist connected with the radiation therapy and a nutritionist connected with the chemo. Before we started I met with a general medical oncologist who I saw/see for any issues such as thrush or regular blood tests and chemo, an otolaryngologist who ordered the PET/CT scans, the MRI's etc and found the primary tumor, the radiation oncologist that coordinated all of the radiation therapy, simulation, etc. I see the otolaryngologist every 6 weeks with a PET/CT every 90 days right now. Both nutrionists gave me handouts and recipes for chemo and radiation. I also had a social worker tied to chemo and one tied to radiation. I also had a dental surgeon who consulted with me prior to any therapy. The medical oncologist and his nurse coordinated everything and all appointments until 6 months past treatment and I make them all now. The medical oncologist just sent me to a physical therapist for the lymphedema (swelling) in the neck and loosening up the stiff neck muscles.

Ed

Hi Kris, just talked with a therapist that will evaluate me tomorrow for lymphedema massage therapy. I am all excited thinking maybe he can help the swelling on the left side of my face and help loosen up the neck muscles. Thanks Again, Carol

Carol-

Good luck! It sure worked for me! I am scheduled to go in for tune-ups every six months. It certainly adds to the quality of life once you get past a day or two of pain from waking up some stiff muscles! Hang in there for it is worth it to have soft tissue again. - Kris

Kris,

I started the massage last week and yesterday was a real workout all over the neck. I know what you mean about the pain that I am feeling since I got up today!

Ed

I too have a team. This morning I saw my surgeon (otolaryngologist) the radiatin specialist, the speech pathologist and nutritionist. I also had home nursing care every day to change the dressings on my trach and graft site -- they also send a dietican every 2 weeks.

Ed, do you have any swelling on your face? The left side of mine is noticeably swollen and red, (neck dissection side) and the right side is always a little red. Kris, do you have any swelling on your face? Thanks, Carol

Carol-
Yes to both. And if I touched the area it was extremely sensitive, lots of tingles! But as they worked on it in PT it became less sensitive to touch and I have not had swelling for over a year. Redness has faded with time. Now that my hair has grown back after chemo I can't even see the neck scar from the disection. Have lost the double chin, though! :-) - Kris

Carol,

I did not have the neck dissection, only radiation/chemo. I have some swelling along the jawbone and under the chin which makes the double chin real big. It is real brown with a bright white patch just under the chin. It is also real sensitive and tingles.

Ed

Thanks Ed and Kris for your responses, you guys are lucky, my scar is quite noticeable, especially in the front of my neck, deep indentation. However, the redness and swelling on my face bothers me more than anything, I feel like a freak sometimes. But an alive freak!!!!THanks so much, Carol

Debbie, do not give up on those fluoride trays, they are really essential. It may be that the upper one just needs to be trimmed some to stop the gag reflex. But fluoride is an essential part of any radiated persons future if you wish to avoid dental caries from the decalcification that is caused by radiation. The consequences of losing a tooth a few years out of treatment can be catastrophic. For sure the fluoride tastes horrible, but compared to osteoradionecrosis from a non-healing socket after a tooth is lost, it is nothing.

How long after treatment are you supposed to use the fluoride trays? I finished my treatment Oct, 2002 and have not used the trays since. But, Brian got me scared...

My dentist has advised me to use it at least a couple of times a month - forever.

My prosthodontist has me use it 20 minutes a day with Gelcam every day for the rest of my life. I put them in when I take my shower. Gelcam stains the teeth worst than smoking did. Not cerain how effective it is because I am going to have to have both my upper and eventually lower teeth capped. Maybe it just put off capping them for a few years.

Eileen

hi Debbie,

my story: teams and fluoride trays don't always mix.

Cancer doc says get trays and wear them at nite.
Dentist makes them up for me.
Treatment starts.
Shortly i'm in big agony wearing trays at night. to over come insertion problems, i used ice packs on my head around temples to chill out and cause diversion before insersion. i really have to get right each nite to do it because it almost brought me to tears. then as i sleep, flouride ouzed out and i suffered. i learned to paint the trays with q-tips to reduce the overflow.

then i see the cancer doc who asks how things are going... i say ok, but the trains aren't fun.

fortunately he follows up with. 'how are you using them'

i say put them in before bed each nite.

reply ' i didn't tell you to do that! you only need to wear them 10 minutes'

for me, (a) dentist didn't give instructions and (b) i assumed 'wear them at nite' means all night.

so i left happy that it would be just 10 minutes each evening.

it's a couple of years later now. i smile about it big time, with all my teeth in place.

You can do it.. just get the fitted right and get your head right.... it ain't all night.


cu,
larryb

larryb,

Thank you for the story and the reality check. The moral of the story is listen to everybody, try what you think they are telling you but do what feels comfortable. Got it!

My dental surgeon didn't mention flouride anything, my wife works for a dentist that gave me flouride toothpaste and told me to put no more than a pea sized amount on and brush for 2 minutes. I then sleep with the upper or lower occlusal guard because I have been grinding my teeth all night from my jaw muscle being so tight after radiation. I go through periods of teeth hurting and being sensitive to no problem. I use Sensodyne toothpaste, too. It is funny how we adapt to whatever it takes.

Ed

Fluoride is forever, ten minutes sounds about right, at night just before going to bed. Any other time and you are drinking water all day and rinsing it off your teeth too soon. I use the Biotene toothpaste because there is some validity in their scientific claims that enzyme replacement helps prevent caries and periodontal disease, plus it has fluoride and calcium in it. If you use a Rx strength fluoride toothpaste, Prevident 5000 from Colgate is one, you can substitute that for your trays a couple of nights a week, which I do because to this day the fluoride is still one nasty thing to put in your mouth!! Afterwards you should not rinse or drink for 15 to 30 min..... I seldom make it to the 30 min mark. By the by for those of you that are caregivers and may be taking antidepressants, please note that selective serotonin reuptake inhibitors (which they all are) cause mild xerostomia, as do drugs for diabetes and many other conditions. While not an acute form of xerostomia, Biotene toothpaste will help prevent problems while you are on the drugs.

Big team effort. Surgeon, Chemo, Radiation, Nutritionist, combo PEG specialist & nutritionist, Dentist, Home Care Nurse, Social Worker

I use Butler Protect Neutral Flouride Foam. This is the stuff the dentists use for in office flouride treatments. You will have to lobby them to give it to you. It is not available over the counter. It is pH neutral so it doesn't burn. It's a foam so you use very little and penetrates very well. It's mint flavored and doesn't gag you. It's a 5 minute treatment. It doesn't leave any unpleasant after taste either.

My trays costs 200 bucks and these are custom made ones. 400 bucks is a rip. They should be ashamed of themselves.

My trays were $1,050.00 each! Fortunately, insurance paid for all of it. I think I will also start using mine more frequently. Since treatment stopped, I have been very infrequent in use but will start using it more. I didn't have a team, per se, but specialists such as nutritionists, social workers, psychiatrists, etc, were available. I have found that the best source of information are the nurses. Usually when they are weighing me or taking blood pressure, they answer lots of questions.
Regards, Kirk.

My dental oncologist at M. D. Anderson said the flouride trays are indeed forever. He perscribed Colgate Gelcam (OTC and about 8 bucks for two tubes) 10 minutes every night after brushing and flossing. He explained that our syliva is about 90% water and a number of different compounds in the other 10%. That other 10% is all important in it's protective properties. Additionally, the radiation may have not only affected the quantity of syliva, but also the quality. The flouride trays are our best defense against dental decay that is often just one more lovely after affect of radiation treatments.

In answer to the original question in the tread: I had 4 docs during my treatment: An ENT, rad onc, med onc and dental onc. I also had a nutrionist as well as access to other services such as a social worker if I needed them. I was very lucky to have a great team.

-Brett

My goodness! I was never informed about "trays", nor flouride treatment, etc. My radio/onc said I don't need to see the dentist very often, only 6 monthly checkups. But I think I'll see my dentist next week as a few things are bugging me. PT? None recommended for me as yet, I'll do my own research. Don't see my ENT/onc till mid June. I use Biotene toothpaste, and now the mouth ulcers and thrush have almost gone I feel much better - they were the real killers for me. A lot of pre-preparation was learnt through this site, and personal research.

Thanks again.

Tizz

"Radiation: The Gift that Keeps on Giving!!!"

Dinah

Like Dinah said, the radiation is bad enough but it's the xerostomia will get your teeth also. Dry mouth and tooth decay go hand in hand. I have had great dental care for years, use the trays often and have still have had 2 repairs for crumbling teeth since the end of treatment. I'm also going in for cleaning every 4 months. Biotene is a great product, I use it myself, but it's not enough. Don't get a false sense of security.

Tizz - your rad/onc flat out gave you bad advice - he should stick within his specialty.

For those of us blessed enough to keep our own teeth, there is a price to pay and that is eternal vigilance and meticulous oral hygiene. Dental trays and regular flouride treatments, along with flossing, Waterpiks, perio-aids, toothpicks, Sonicare, frequent phophylaxsis, whatever it takes. Having to have an extraction, post radiation, can be fairly serious business. There are pictures on the site of ORN (OsteoRadioNecrosis), literally radiation bone death, that should you shock into the reality of this and why dental hygiene has to be a part of the "new normal".

I am one of those lucky ones who still have all the teeth kept in my mouth. I just went for a dental check yesterday and had two minor fillings. The advice my dentist always gave me is drinking more water to keep the mouth moist all the time, frequent brush and flossing after meals. I use Oral B mouth wash and don't know if it helps or not. I start using Biotene toothpaste but do not know if it is more effective than ordinary ones like Sensodyne I have been using for a long time.I go for a dental check every 3 months and a thorough clean every 6 months. Other than that, I have no idea what you all have mentioned about dental trays,flouride treatment,etc. Gary, if you don't mind, would you tell me in greater details of those terms you have listed in your post. You may email me at [email protected] if you think these terms are common enough that others here know very well. I seem very ignorant at this point but know well that our dental problem can get really serious if not taken care of . Thank you.

Karen

Hi Karen,
I decided to post it publicly in case others might be helped as well.

A Perio Aid is a toothpick holder that is used to clean the sides of the tooth at the gumline. (you break off the toothpick in the holder so only a piece of it sticks up, perpendicular to the holder).

A WaterPik is a device that uses pressured water to clean the teeth at the gumline.

Sonicare is an electric toothbrush

Dental trays are plastic molded shells made from full mouth impressions. The fit the upper and lower teeth exactly so very little flouride is required for treatment. It also holds the flouride in place for a more effective treatment.

If my descriptions are still confusing let me know and I will take pictures and email them to you.

Gary, thanks a lot for your descriptions. If it is not too much trouble, please send me some pictures (other than the Sonicare) to help me understand even better.

Karen

Anyone who paid more than a couple of hundred dollars for the trays got ripped by doctors in my opinion. I used to be in the business, and the trays are vacuum formed over a stone model of your mouth by a lab tech in about 15 min. The impression taking and the model making costs the doc about 15 min in time and 25$ in materials. For those on a really tight budget, go to the drug store and get an athletic mouth guard kit. They are about 24$ you can make your own set of fluoride trays out of this.

I have a big team! Surgeon every 6 weeks, increasing intervals throughout the years; 2 medical oncologists (touch base via phone), 1 Family Doctor (checking mental health bi-weekly), 2 social workers (mental health weekly), nutritionist who's GREAT (now weekly), radiation oncologist (weekly), radiation nurse (weekly), 3 radiation specialist people (daily), and a company checking the professional background of everyone I'm seeing!

I just posted a question under the cancer dentist thread. The fluoride is hurting so badly and the radiation nurse said it's for after treatment is over. The dentist wanted me to do it throughout. I had the Rx Prevedint (SP?) from Colgate, but had to switch to over-the-counter ACT this weekend. I don't think I can even take that pain much longer. I still have a ways to go. Suggestions?

Sabrina

I had a problem with the mint flavors in the fluoride. It was the mint that stung my mouth really bad. Opt for the wild cherry, bubblegum type flavors, it was milder in my mouth.

When you are in pain from mucocitis etc. fluoride treatments may be something that you just cannot tolerate. If you are diligent about your oral hygiene, (which can be difficult when you feel so miserable from the treatments) I would pass on the fluoride until your soft tissues are able to tolerate it. Try the Laclede Biotene product. It does not have a foaming agent (which is in most toothpastes like Crest) and that is one of the culprits in the irritation issue. It has fluoride, though not in Rx strength. If what you are using is painful, it is likely slowing down the healing process too. Perhaps a compromise is in order for you.

Yesterday, the Biotene mouthwash started burning too much to use. Rinsing with 2 cups water with 1/2 teaspoon of baking soda seemed to help calm it.

The Biotene toothpaste is doing okay, though the toothbrush is starting to feel like mild sandpaper. My social worker also recommended brushing with devices looking like "sponges on coffee stirrers". For some reason, I thought I read about it here too. Coincidentally, yet another advisor recommended them yesterday and emailed me:

Sponge Swabs:
Toothettes by Sage Products, Inc. 1.800.323.2220 manufactures the toothette.
You can goto their site and click on Clinical Products and Oral care...www.sageproducts.com

I hope this helps someone else, too! I've been recommended to a local dentist specializing on radiation/chemo patients. Hopefully she'll have more recommendations.

Thanks again for everyone's advice!

Sabrina

How time flies! I had forgotten the pink sponge-on-a-stick. Those really are great. When you get a little better, buy a toothbrush for children. I got the one for the youngest and it was soft enough to work quite well. The Biotene mouthwash burned me too. The mixture of water and baking soda given to me also included some salt, and on occasion I was to add a little hydrogen peroxide. Whatever, it worked and I never had to battle thrush, which is so common. Hang in there! And before I forget, definitely do stretching exercises with your jaw. You can ask your team about this, but you want to avoid the stiffness that makes opening your mouth painful or impossible. The exercises can be accomplished with a device called Therabite, with stacks of tongue depressors, or using your thumb and forefinger to push your jaws apart. I didn't find out about this until near the end of my treatment, so it was a struggle that needn't have been to get back to normal. Just one more thing for you to remember!

Sabrina,
you should be using a baby's toothbrush toothbrush at this stage if you are not using one already. The radiation beats the gums up pretty badly so the softest toothbrush you can get makes a lot of sense. The adult soft brushes are very stiff compared to a baby's toothbrush.

I had to forgo flouride for a while also when things were just too raw and destroyed. Make sure that your flouride treatment is pH neutral.

If your pain is that great, you may need to employ a swish & spit like "pink magic" before attempting dental care (which has morphine in it).

All right, All right I give in. I'll start using the flouride trays again. You guys have inspired me besides my teeth look terrible already and I just finished treatment January 23.

Lynn

I had the salt and peroxide recipes, too, but were scared to use them. The salt recipe said to skip that if I had burning. I suppose it's still worth trying at least once.

On the peroxide, I have a gross background story (sorry). Last summer I had blood under my big toe nail. The doctor removed half the nail where the blood was to check for cancer. It came back clean, but I asked about putting on peroxide. He was emphatic that I not do this. He said peroxide was an irritant, like alcohol w/o the major pain, and would slow the healing process. I applied this logic to my mouth, but maybe the mouth is different?

My poor doctors don't know what's about to hit them. You guys have armed me with some great questions on the different discussion boards. They may not thank you, but I certainly do!!!

Sabrina

Sabrina, I found that all my docs were very happy that I knew as much as I did. I was told again and again that it made their jobs easier to treat a well-informed patient. Also, knowing pretty much what to expect made it easier for me. You are going to be just fine!

You may want to contact your local cancer center for nutrition advice. We had one come in the first week of treatment but with my research, I found easier and cheaper ways to produce much more nutrition. YOu may want to look at my post in Currently In Treatment section -- I wrote about the items I found to use to create his own nutrition. First, you need to determine exactly what nutrition is needed (high protein, carbs, etc). My husband needs both high protein and carbohydrates, plus general nutrition such as vegetables and fruits. Once I knew that (he has a PEG tube), I spent a couple of hours in the grocery store and health food store determining what items were blendable to liquid form and what provided the most of these nutrients for the money. Generally, my recipe is protein powder (from health food store; based on soy protein - you can buy similar at Walmart where the Slim Fast, etc are located), baby food vegetables and fruits, olive oil, Karo syrup (high carbs), milk, yogurt, peanut butter, tuna fish. When you look at the amount of Ensure/Boost, etc. that is needed to get the daily nutrients, it is both cost- and quantity-prohibitive. These shakes I make myself are much less expensive and provide about 4 times the amount of nutrients in a day than the recommended amount from Boost, etc. Now, of course, if a PEG tube is not used, you would consider flavor more than I have to, so keep that in mind. I just would suggest going to the grocery store and writing down what provides X grams of each needed nutrient, the cost, and figure what works best. If you do not have a local cancer center, contact your oncologist, radiologist, whoever and ask them who to talk to -- they surely will know. Good luck.