Hi

My mother (60 years old) was diagnosed with squamous cell carcinoma of the retromolar trigone (area behind the wisdom teeth) in April 07. She had a surgery in May - 26 nodes and part of mandible removed (titanium plate was put). Pathology showed that nodes were all negative, cancer was found on the mandible and the nerve but the margins were clear. She will start radiation and chemo in the next couple of weeks. She was sent to an oral surgeon and all her teeth were removed today. Does anyone else have similar experiences - When do they make dentures? What major side effects could she have during radiation? I would appreciate any input. I get a lot of information from this forum and have a lot of respect for all you tough people out there.

sspr,

Sorry to hear about your mom but a few answers might be helpful:

Where is she being treated?

What type of radiation is she going to receive?

What type(s) of chemo will she receive.

Will the radiation and chemo treatments be concurrent?

Have they staged her cancer?

These answers will be helpful.

Welcome sspr, this will help with terminology.
There are 2 search engines on the OCF site. One at the top and one at the bottom of each page. Surf the site. It will help you learn all its functions and resources

I

David and Petey

Thanks for your response. I am adding a signature so that it will be easy to see the DX and TX. I am wondering if anyone out there knows how they deal with removal of all the teeth prior to doing radiation. When do they make dentures or do implants following the radiation. My mother is doing pretty good following the surgery but I'm a little concerned about her nutritional needs since all the teeth were removed. I will appreciate any advice.

SS

Helping mother, Age 58, SCC Stage IV retromolar trigone (behind wisdom tooth), non smoker, never drinks, Surgery on May 3rd - removed part of mandible - titanium plate added, 26 nodes removed - all negative, cancer found on mandible and nerve, margins negative, IMRT (5000 - 6000 rads) x 30 to start next week along with chemo (once a week x 6 weeks).

SS

I also had my remaining few teeth removed. I was told I should not get dentures until 6 months after radiation as the jaw & gums will shrink.

I drink ensure and eat soups and soft foods. I "mush up" other foods. I have put some things in the blender but it is a hastle for me. I am pretty much on my own when it comes to eating. I just pick from what is made that I feel I can eat. Then I fend for myself if still hungry. (no care giver, long story)

In "After Treatment Issues" read "dentures". In "survivor stories" read "RE: How much of your tongue..."

Each person is different and no two DX/TX are exactly the same. Some may be similar.

Keep asking all your questions. That is what this forum is for, to help each other. The only dumb question here is the one you do not ask!

It's too late to discuss the teeth removal but unless they are in really bad shape many treatment centers don't automatically remove them anymore. I refused to let them remove any teeth and I am 60.

She might be able to have dentures or possibly even implants. It is a long and costly process since insurance won't typically pay for the dental restoration part of it. She may also require HBO to strengthen the capillaries in the areas where implany bars would be placed. She won't need HBO for dentures.

She will have to be fully recovered from the side effects of surgery and/or radiation before they would fit her with dentures if that is the case. Maybe as long as a year.

SS,

This was a post I did a while ago in response to the same question about your upcoming journey.

To, BB and Betty,

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Questions ?

David- so true my friend. Just reading your journey mede me think I can get through this with my husband. Its a long and difficult road. Thanks for sharing.

LJ

David- I just read your post to my husband and he slowly closed his eyes and nodded his head. (like finally someone understands what I am going through) This was the first time he actually let me read through a complete post. So I thank you again.

David

Thanks so much for your response. I just want to be able to tell my mom that there is light at the end of the tunnel.

Thanks again! God bless.

SS