Hello all--I am very glad to start looking through such a large group of messages and learning all I can!

I am the wife of the patient. My 31-year old husband was diagnosed with OCC of his right tongue the Tuesday before Thanksgiving 2012 and everything has been such a whirlwind since. He was diagnosed as Stage I, but it was right on the Stage II line. He had a partial glossectomy in December 2012 and he is to start Rad and cisplatin next week. I am nervous about his side effects and I hope to read more about what to expect and how to treat them on this forum.

He has never smoked anything in his life, and barely drinks any alcohol. He is otherwise healthy and strong. He tested negative for HPV. We have very little idea what could have caused his cancer, so he is receiving especially aggressive treatment.

He is a physician in training himself, so he knows a lot more about how things could go than I do, so I have been playing a lot of catch up online and preparing myself. We just moved six months ago halfway across the country from our family so I am extra glad to find this forum.

Question: how many of you saw a Dentist before starting treatment? Can the MO and RO provide the proper things to help protect his mouth?

Look forward to getting to know you all.

Thanks,

No he needs to see a dentist and ask if they are experienced with oral cancer, it's better if they are.

Sorry (and welcome)that you both are having to deal with this but this site will be worth it's weight in gold. Encourage him to post as well.

Watch out for Cisplatin especially if he will be getting it only 3 times (larger doses) vs 6 weekly smaller doses as Cis has a nasty reputation of causing permanent high frequency hearing loss. A tell tale sign is if he starts to hear "ringing" in his ears which usually will start, if at all, after the 2nd large dose.

He MUST consume tons of calories and water starting now through at least the end of his first year post Tx. We recommed at least 2500 to 3000 cals EACH and EVERY DAY and 48 ozs of water.

Remember each of us can react differently and nothing that happens is abnormal. His reaction to the concurrent rad and chemo can be anything from mild to extreme but most of us seem to have our worse times starting around week 4 and lasting until about the 2nd to 3rd week post Tx with the worst time, believe it or not, coming after the radiation ends.

Do ask us ANYTHING.

Good morning - your husband probably should get fluoride trays made by the dentist to help protect his teeth during radiation as radiation can do a lot of damage to teeth. If possible start using them daily now because as he gets into later treatments it may be too painful to use them.

As David said above, start eating now, and eat a lot, ie try to get fat. Husband WILL lose weight in treatment, that's almost a given. The problem is as treatment proceeds the taste buds will likely go and when food has no taste, the appetite goes away. There were a lot of days I would have been content to eat nothing. I didn't hurt, I just wasn't hungry. Don't eat for a couple of days and the weight loss can become excessive quick.

A rule of thumb from my nurses, once you lose 10% of your body weight they put you on a PEG feeding tube. You don't want that. The nurses will weigh him at least once a week, they will be watching his weight closely, and from personal experience even the loss of one or two pounds in a week will make them fuss. I had several weeks where I lost 4-5 pounds, that got me fussed at a lot.

Cancer is hyper-metabolic, the disease is consuming a LOT of the calories you put in as food, which means those calories are not available for husbands normal metabolism. The treatments make it even worse, between the disease and the treatment there's very little left over for him, so he has to eat enough to satisfy all 3 demands. He literally needs to eat like a pig. Don't worry, I will safely bet you a dollar he won't gain a single pound in treatment regardless of how much he eats.

Now, let's be realistic. We can sit here and tell you all day long to eat, eat, eat. But that may or may not happen, it depends on your husband. I was a plump little dumpling at start of treatment, so I had lots of extra weight I could afford to lose, so weight loss just got me fussed at, it didn't put me in the hospital for mal-nutrition. Had I been skinny and trim weight loss would have been much worse for me. I'm NOT telling you to let your husband skip on eating, I AM telling you that if he is a little plump and he misses a meal or two, for you not to freak out.

Most people recommend you start treatment with no dental problems. If he needs a filling, get it done prior to treatment. If your dentist is on top of things they will likely recommend he get a bottle of chlorhexidine gluconate (another name is Peridex) and start using it at least once daily. Treatment is a terrible attack on your teeth, it creates an environment conducive to tooth decay. Peridex helps provide an environment not conducive to tooth decay. Don't use it too much as I think it stains the teeth from overuse.

That's enough for now, there will be more later. Digest all this stuff and start thinking of the other questions you want to ask. Like David said above, ask anything, there are no taboo subjects when it comes to cancer.

Get yourself a spiral notebook to write all this down in, there is too much to learn to try to remember it all. Make a list of questions for the doctor, for the nurses, for the forum.

Hang on, this is going to be a wild ride. We will help get you through this.

Tony

Hello LWJ,

Welcome to OCF! It's a bummer to be here but the best place for info on oral cancer. You did mean Turkey day 2013, right and a year did not lapse between diagnosis and treatment or is is this recurrence?

Most patients need dental clearance before starting rads. Any teeth with poor or questionable root systems will be evaluated if they should be removed prior to treatments.

Treatment plans are drawn up without regard to etiology from what I understand; prognosis will vary.

Good luck and keep reading,
Don

Thank you all very much for your replies! I did mean Thanksgiving 2013--we are just two months into this.

We did take him to the dentist and she gave him an extra fluoride treatment and wants him to come back after 3 months to be sure, but he had no cavities and he started Rad on time this week. He received his first IV of Cisplatin yesterday and feels really gross right now. But, thanks to the amount of anti-nausea meds he's on, still no vomiting.

I did keep forcing food on him the last few weeks. I made several batches of cookies and went through the McD's drive-thru constantly for shakes. But he had a little extra weight at the beginning. Ironically, in the last year he has lost close to 30 pounds from eating Paleo. So at least he enjoyed his bread and pasta more than he normally would have!

I think he is surprised at how bad he feels today, but he tends to be more of an optimist than I am.

One surprising thing is how few things the doctors tell you! We had to ask for a speech pathology referral and I was the one who made him go to the dentist (after reading this forum). He has three different doctors and none of them brought up those things. They seem very important for comfort and keeping the mouth healthy through all of this.

I am finding this forum to be very helpful.

Thank you all so much!

Glad things are moving along. Often the wait creates more anxiety than the actual treatments. It seems pretty shocking that none of the doctors wanted dental clearance.

Since your boat has left the harbor you gotta deal with what you got. I would watch very closely for side effects and get back here as soon as things start up, which they will.

If chemo side effects become too harsh there are other options like going to weekly or even changing drugs. Rads often kick off numerous side effects so be ready.

What is the situation on PEG? You did not state he has one. If not, that is great but be on the watch if eating and drinking become too difficult.

Make absolutely certain he is getting at least a quart or more of liquid down daily. Watch for any signs of dehydration and get some saline right away to ease it out.

Good luck,
Don

It's sad that your doctors seem to be so closed mouth about advice. Mine was too. The way I got around it was by all the suggestions I received from forum members right here. Early on, someone suggested I get a spiral notebook and make questions lists for my doctors, my nurses, etc. I did that and every week on "doctor day" had a whole list of questions to ask everyone.

While the nurses were more open and helpful in their answers, the doc wasn't. At first he would try to give me the short answer, you know the one that doesn't really answer your question, but gets him out of the exam room the fastest. He's busy, he has a lot of patients to see, I understand that, but I have needs too.

If you accept the short answer you just go home confused and have to ask it again the next week. I went through that a couple of times until I realized, if I don't understand it fully right now, then ask for more detail in his answer. The RO finally got to where he didn't give me the short answer, but a better explained one that I could understand and then act on.

I'm not trying to defend the doctor. One day, after really pressing him for more detail, I semi apologized by saying I'm just being your average patient, wanting to know this stuff. He replied, NO, you are not the average patient, most of my patients don't want to know anything about what's going on. You are very inquisitive and that will benefit you in your treatment, so keep on asking questions, I will keep on answering them.

Ironically, after about week 3 or 4 of treatment pretty much all my questions were answered, so doctor day's became uneventful. I had very few adverse symptoms during treatment. Because I didn't hurt and had no difficulty swallowing a quick look down my throat and an "everything looks really good to me" became the norm. He would then ask what questions do you have for me this week. I almost felt bad if I didn't have at least question for him; I think he started looking forward to my questions. So, I made it a point to have at least one question every week.

I did get mucositis in week 7 of treatment, something to actually discuss with him. I already knew what it was and that other than keep your mouth really clean (frequent brushing, mouthwash, etc) there isn't anything he can do for it.

But, just in case I was wrong, I asked if it was mucositis ... it was. About all he could say then was you are very lucky, you have been very lucky throughout all the treatment phase, most of my patients get it in week 2 and have a lot harder time during treatment than you.

Sorry if I ramble, I like to hear detailed answers, so I give detailed answers.

Tony

HI there... sorry you have to be here... but it's a great resource.

;o) Everything said above is correct and good advice.

Drs tend to have tunnel vision. This is what I do... surgeon - cut, radiation oncologist - cook, medical oncologist - poison. They will inform you about their area of expertise (if asked) but beyond that you are on your own. I sometimes wish the drs who treat this cancer actually had the experience of going through it so they would realize there is more to the dx, and rx than just their area of expertise.

This is one of the reason being treated at a good CCC can be so useful. They often have a protocol for dealing with cancers. For example. I had surgery. Then follow up. Was told I needed radiation and chemo. In the interim my hospital set me up with a hearing test (I was getting cisplatin so they wanted to make sure my hearing was ok) a dentist appointment at their in house dental oncology clinic ( where they examined my teeth, and mouth and then did my trays) set me up with a dietician (so we could prep my diet and she told me what to avoid food wise - ie: antioxidants etc..) They arranged for my PEG, and gave me samples of liquid nutrition to try out. They have an in house radiation nursing clinic for any problems I might encounter. They also have a radiation education program for first timers that tells you what to expect.. and a pharmacy where they are well versed on all cancer meds. They also assigned a nurse practitioner to me as a go to person if I had a problem. Plus a hope lodge if I needed to stay in from out of town. It was one shop stopping. They also worked to coordinate my schedule so that rads and chemo and drs appointments lined up - though there could be a little more communication between rads and chemo with regards to appointment times.

I did have to ask for a referral for physio for my should from my neck dissection - but I was not seeking that in house.

with regards to chemo... some people sail through it... some people have a brutal time. I was fine - my friend who had Base of tongue cancer puked his guts out from beginning to end. It was so bad he lost 50lbs and they were threatening to hold back his final chemo because of it. Everyone responds differently.

hugs and he will be okay... this treatment sucks. But it is doable.

Thank you all for your helpful replies. It is so nice to have this forum. We haven't met many other patients at the cancer hospital (which is a CCC), and the ones I've met in the waiting room do not have head and neck cancers. So this is so nice.

I think one of the reasons that the doctors didn't volunteer as much information is because my husband is a doctor himself. He is actually in his first year as an med onc fellow! (Oh the irony!) So I think they assume a lot of things, even compared to non-doctor patients...since they are all doctors except me! I have made all of the doctors involved explain things to me in non-doctor language so that I am sure to keep up. And I did go in with my notebook and my phone with all of my questions.

As you mentioned Cheryl: at least one silver lining in all of this is that I hope it will make him a more sympathetic and helpful cancer doctor himself in the future. How many med oncs have gone through all of this personally?

I don't think this CCC has a dental oncology clinic so we are on our own for that one. He didn't have any cavities or any dental issues to resolve before he started, so I think that is why no clearance was required.

He is still feeling crummy from the cisplatin. He has had several patients on cisplatin, and they usually come back and say that they felt bad for a few days, not much like eating, but that the side effects were well controlled. I think he is learning first hand what "well-controlled" means from the patient's point of view. It is true that he is not vomiting, but he feels really sick to his stomach and is barely eating. He is also just feeling exhausted. It can be difficult to convince him he needs to eat when he is a cancer-doctor-in-training himself and he should KNOW to eat whatever he can, but it is certainly different when he is the actual patient. He also said that every now and then the cisplatin makes his patients really really sick, and luckily that isn't the case here. I just wish he would eat more!

My husband reminded me last night as I was telling him about the forum that the Rad Onc did bring up the dentist issue, but I was the one who had to make the appointment and get him to actually go to the dentist!

He has no PEG yet, I don't think they've been weighing him this week yet. He is actually eating some shells-and-cheese on my insistence so I hope he will continue to feel better and eat more. He is receiving a bag of fluids and anti-nausea for three days after the cisplatin, and they seem to be helping a lot.

Thank all so much, we will keep on trucking and see how it goes.

I think I'm some ways it's a blessing to have a dr. In the family and in some ways it's a curse. I used to be a nurse so I've seen this disease from both sides as well. The thing drs don't realize is that it's totally different being a patient - they assume - he's a dr. So he knows. Guess what.. ? When you hear cancer all rational though leaves for a bit. Then despite any knowledge you may have in the field - unless you have hands on day to day experience with the
Is particular type of cancer - you will still not likely have the knowledge someone works with it day to day will. Though they may assume you do. In someways it helps not to let them know you have a medical background. To this day my ENT doesn't know I used to be a nurse though he did ask me a few times - what is it you do for a living, again? (His fellow knew as I told him the first time I met him he could talk to me in medical terms as I understood the lingo - )
The upside to them knowing of course is here's a certain comraderie and the drive to do their best because "he's one of ours" not to say that the drs and hospitals don't all want to do their best for their patients but I think in some way it hits home more if you know he person.
And to be honest as I said some drs. Do what they do. Other disciplines deal with other things - what they don't realize is not all patients have the knowledge to ask for referrals - they just accept that my shoulder is screwed etc..