Hi, all. I'm home after surgery to remove the right side of my hard palate and seven teeth; recovering quickly with a well-made obturator and good pain meds. I just found out yesterday that I'm going to need radiation to get the cancer in the nerves around the site. The surgeon says it will be IMRT -- I looked it up and it looks like a very refined and accurate form of radiation therapy. Anybody have experience with this? I'm wondering how long it will go on, whether it's always five times a week for several weeks or what? I'm very worried about losing more teeth, too. Also, is there typically pain with radiation? Hair loss? Or is that true only of chemo? Also, how long do the tattoos stay there?

Hi, Im sure its great being home to finish recovering. Hope you heal quickly.

I do not know the type of radiation I had. What I do know about it is I did not have any tattoos. I had to wear a plastic mask while lying on a table. The mask makes it so you do not move while getting the radiation treatment. Sounds scary but its something you adjust to very quickly. You probably will lose the hair on the nape of your neck. It will take a while but it grows back. Men lose facial hair also.

As far as teeth go, you shuold see your dentist about floride trays, this will help protect the teeth you have left. If not the dentist then a dentist who specializes in oral cancer patients (sorry, I do have one but can never remember his title).

Radiation is not an easy road, but it can be done. Best of luck with everything, think of the end result as being back to good health.

Thanks, Christine. I will ask about a dentist and fluoride trays -- I remember now that the surgeon said yesterday that fluoride might be a part of the overall picture.

I'm happy to lose the hair on the nape of my neck -- I have a lot! I'm less worried about hair than I am about teeth, actually. But in the end, you're right, good health is the goal, regardless of hair or tooth loss.

Thanks for your words of encouragement.

Most people who had radiation treatment in the last 5 years (or so) had IMRT, which means that you are in good company.
>>>see also
http://www.oralcancerfoundation.org/facts/radiation.htm

typically there are 30-35 treatments 5 times per week resulting in 6-7 weeks total time. Other treatments for example twice a day are possible but not standard.
Teeth: that seems variable: I did not have to remove a single tooth before the treatment. Later on one molar bit the dust... use the fluoride trays.
Radiation itself is painless, however the longer term effect it has are not. Typically the initial few weeks 2-3 are a non event except for the fact that you likely loose all taste. (which comes as a surprise even if you know that it will happen). The last weeks and especially the week(s) after radiation are most miserable. I am not trying to frighten you. But it may help to know what MAY happen. We all react somewhat differently, some work throughout the treatment others are pretty much sidelined. You may want to look into a PEG tube and discuss this with your team. Should you get chemo you might also bring up a port.

M

My husband had a very similar operation on the left side, has an obturator, and also went through IMRT Radiation due to the cancer being in the hard palate. It was mainly for precautionary measure because of the likelihood the cancer could have traveled beyond the site of the tumor - even with clean ridges.

He did not finish all 30 rounds. With 11 left to go, he decided he could not take it anymore, and did not finish treatment.

Radiation itself is painless, but the side affects are tough.
He lost all taste and sense of smell during treatment and all desire to eat which resulted in a lot of weight loss. (Go with the PEG if this happens- just my suggestion, but he would have no part in it).

He didn't lose anymore teeth after Radiation. His facial hair is growing back in patches, so he tries to keep it shaved all the time because it's noticeable. He did lose one large area of hair loss about 4 inches wide and 2 inches tall at the base of his head. It has not yet begun to grow back in. It's still a smooth area, like the facial hair patches where the beams were aimed.

His sense of taste and smell have both fully returned and he is gaining weight back. He now likes potato salad, and hated it before, so maybe the taste buds change (or I got better at picking out Potato salad).

Here's a link to detailed info about IMRT Radiation Therapy. http://www.radiologyinfo.org/en/info.cfm?PG=imrt

I hope this helps ;-)

Let me add - please have a good support system in place before your treatment begins. Even if it's just us. This is an excellent place to come for support. It took me a while to get past lurking and begin posting, but I'm so glad I did. An absolutely wonderful group of people who truly know what you're going through and genuinely care.

Thanks, Philly and Markus. All this info is helpful -- I had no idea about the possible loss of smell and taste (if only temporary). I'll check the website info out, too -- the more I know, the better, right?

I know what a PEG is, but what is a port?

A port is a catheter that is placed into your chest wall and goes directly into your blood stream...my Dad had one and I advised my Hubby to get one too, which he did and was grateful...no sore arm veins to deal with and it's easy access for chemo, blood tests.
My hubby's hair began to grow back three weeks post-radiation and is still growing back after 5 months. He was grateful not to shave for a few months...his skin was like a baby's bum. He was told not to shave any residual hair unless absolutely neccessary, so as not to irritate the skin...only one pass with the electric razor. And he did shave his head...well actually I did, as that is my profession. You can buy a small hand trimmer at a beauty supply store...keep it clean and go gently so as not to nick the skin.
Smells were a problem in so much as to be irritating...blucky! was his word. I could not cook any red meat in this house. Taste buds are all coming back WELL. My best to you!

_______________
Donna

Caregiver to hubby Tom--Dx 09/08, SCC of left tonsil +margins, Mets to nodes, tonsillectomy, Cisp,TXT,5FU x3, IMRT 33 rads + Carbo x6, RND 3/09. Dx NHLymphoma 04/09, CT of Chest, Stom,Pelvis--all clear, 05/09 PET--all clear

Of all the things I could have/should have done re my treatment the Port would have come in very handy as I became very dehydrated throughout the later stages of my Tx. Probably because I didn't have a Peg but that's another topic. lol

You will probably also be introduced to another drug, Amifostine (brand name Ethyol). It is a drug FDA approved for patients with head and neck cancer who are receiving radiation after surgery. Amifostine helps decrease radiation damage to the salivary glands. Search the forums here for more information. Many of us have had this treatment.

David:
Are you confusing the PEG with the PORT.
PEG is the feeding tude
Port is for medication.
Sandyst

Fluids given for rehydration ARE medication. Bags containing saline and dextrose administered intravenously to realign the balance of electrolytes ,blood sugar and potassium .Severe dehydration cannot be redressed by simply taking a couple of litres of water through a peg.

Sandy if you reread my post I said that the one thing I wish I had gotten was a Port which I could have used often because of my dehydration which was probably caused by me not getting a Peg.

Thanks, everybody, for info on the PEG and Port, fluoride trays and Amisfotine (sp?). I will look into all of these as I begin radiation.

Went for a bike ride today for the first time since surgery - 20 easy miles. David, I, too, am an exercise nut (cyclist) - I can't wait to start pushing the big ring and going up some hills! All in good time...

MM,

Hang in there. I had to stop driving my car during the worst part of Tx for about a moth and a half so that when I finally got back behind the wheel I felt kind of strange. You can't imagine how difficult it was to get back in the saddle after a 5 month layoff!! In Florida we can basically ride year round so I don't even own a stationary bike or belong to a health club. I rode probably 5 miles my first outing and I was still weak and had horrible dry mouth so I went out with a Camelback strapped on my back (first time ever) and had to suck water like every 5 seconds. It was horrible because how can one push a big gear and have to put a tube in his mouth every few seconds to survive? Fortunately this was short lived as I was soon riding without that sack and really having no dry mouth problems as long as someone didn't want to talk to me for very long.

David,

I guess I need to be prepared for setbacks during Tx, huh? For the time being, I'll do my easy rides and hope for not too bad side effects when radiation starts. I can't imagine sucking water out of a camelback every few seconds...you'd have to leave it in your mouth the whole time! Today, the water just came out my nose when I drank from the bottle (palatectomy issue)...Oh, well. So, I'll get my camelback cleaned and ready.

mighty.. it depends, I did all of my driving myself to and from. I never had to pull off the road 1 time. maybe I was just lucky or a tough old fart LOL

MM
plan for the worst and hope for the best. Try to not loose perspective, riding during rads really should not be on your must do list.

..re Amifostine, that really can make you miserable. (see posts here). I did not have it so I cannot comment directly.. except that my RO was dead set against it. It really can cause problems and it greatly depends WHAT you irradiate. You have 3 pairs of major saliva glands.

M

Chris
Please investigate Amfostine (?) thoroughly. A friend on this list was given it in conjunction with radiation. He become very sick after the 3rd week, and the doctor discontinued it.

I believe that only a few people (maybe 30%) are able to tolerate for the whole treatment regimen. My doctor refused to give it to me.

Sandyst

Chris,

I couldn't keep the damn thing in my mouth either as I had to keep my mouth open to suck large quantities of air.lol

Thanks, everybody. I'll look into the Amifostine issue carefully. I have been doing some reading lately (some good, some scary) about drugs given with radiation. Looks like there's some effective new stuff out there. My surgeon at Dana-Farber, who I love, referred me to the radiation guy here in Hartford, so I'm hoping he's good.

The riding will remain second priority, but it sure is fun!

As a counterpoint on the Amifostine, I had it daily for 39 IMRT treatments. I would have a small bit of nausea about 40 minutes after they completed giving it to me. Usually just after I had completed radiation and was walking to my car. You could almost set your watch by it. It passed by the time I got home.

I had the two submandibular salivary glands removed as part of the neck dissection, so this may have been more important for me than for others.

Jeff is right on.
You need to consider the irradiation volume and location with respect to the submandibular, sublingual and parotid (major) saliva glands. If they are fully in the irradiation field the probably are going to be nuked regardless (your RO should know more). If they are not in the radiated volume then they are fine anyway. In my case the submandibular an sublingual were in the radiation field and were fully toasted while one of the parotids was totally spared and the other received partial rads (from which at least a portion if not all was expected to recover. Which it did.
M

Since my cancer is in the upper maxilla/palate area (I don't know the technical terms), that would mean sparing the lower salivary glands, wouldn't it? Are there upper salivary glands, too? Also, IMRT is supposed to spare surrounding tissues, isn't it? Or is that just an "at best" scenario? I suppose these are all questions for the RO...

Chris,

Your RO will be the best to answer your particular radiation field questions and I'm sure he will be able to give you a pictured guide as well. You may also experience some scatter radiation damage but the IMRT is designed to limit the damage of our good tissues but again whatever is in the way of killing the bad cells may be destroyed.