Hi everyone,
Just had a few questions, wondering if anyone can help.
My mother is 4 wks post op from surgery on her tongue. She meets with the RO April 12th Wed.
Next week.
My first question is will they start radiation on her first day or what exactly goes on. Will they fit her with the mask on the first day and any idea how long that takes?
She just went to the dentist today for xrays and cleaning. She has one tooth that is start of an abcess and she is having that pulled tomorrow.
The dentist sent her to an Oral S to have this done. They suggested having it pulled before radiation begins to prevent any further problems ahead. She has no pain in that tooth or the area surrounding it. I was really surprised they are going to just pull it and not try to save it.

Anyhow, I was wondering if this would delay her radiation because they are pulling that tooth. Is there a time frame you have to wait for it to heal prior to radiation? I hope she does not have to wait to get her radiation treatment started.

She is also going back to have impressions made for flouride treatments. How does the flouride treatments work? Will she be doing these at home or at the dentist? Is it weekly or what?

I would appreciated any information from anyone.

Thanks you very much
Michelle

hello MIchelle,
I should be able to answer most of your questions since I am not that far ahead of your mom.
question#1. she probabley not start that day, they will have to do measurments and fit her properly with her "custom made" mask, so she will not start radiation that day maybe a week or two later, the mask fitting takes maybe an hour at most.
Question #2 If there is any concern about teeth or even a tooth it has to go, because the problem is osteoradionecrosis afterwords, trust me she does not want to deal with this. Many people here have all of there teeth pulled before radiation because of this possability, I know I did not have to have any teeth pulled at the time, but now I am having trouble with two molars, and man are the procenting with caustion as to what to do , meanwhile i am suffering with a few tooth aches that are miserable. she may be have to wait a bit , just for the socket to heal but it should not be a big delay.
Question # 3 The dentist will make trays for her teeth and give her a prescription flouride that she will do at home , it is kinda easy but does not taste to well and it made me gag, I stopped using them part way through treatment, I used it right before radiation everyday and was afraid that I would vomit in the mask while being bolted to the table, silly me, If I had known what i do now about ORN I would have used them all the way through, and did not have to use them right before radiation everyday I could have done it a t any time during the day, (I was unaware of this site at that time, If I was aware I would have gotten a ton of good advice here and known better)
Now one of my questions to you is , does your Mom have a PEG tube if not she will probably need one, nutrition is vital at this stage of the game,
all of this is managable stuff so stand firmly behind your mom, prop her up when she needs it. Radiation is not easy, but it is just a thing that has to be done period. No matter how tough it gets don't let her talk of quitting , remember it is only so many days. Hang in there my girl, with you by her side your mom will be all the better for it.
always lenny

Lenny,
Thanks so much for all the information. It really helps. You sound like a very kind person. I have read some of your postings and you offer so many kind and postive words to people. That is really great. Are you finished with all your treatments, radiaiton?
We have met only one time so far with the RO and that was prior to my mother's surgery.
We go see him again next week. At this point nothing has been brought up about a peg tube.
My mother is a very postive person herself and her strength just amazes me.
We will have to wait and see exactly what is involved in her radiation. She had half of her tongue removed- clean margins. CT scan of neck normal. No indication of any lymph node involvement. I think they will radiate the one side of her neck, but not sure about the other side.
How are you feeling? What type of radiation did you have? Did you have chemo?
Hope things are going well for you.
One day at a time.
Take care
Michelle

Hello Michelle,
Thanks for your kind words they are encouraging to me, I must apologize for all my spelling errors, my mind works faster than my typing fingers (poor excuse for a high school teacher, although I teach history). I am sure that your mom's radiologist will bring up the Peg tube, if he does not be sure to bring it up, it may get difficult for your mom to eat, hopefully that will not be the case but you want to be prepared none the less. As for me I am feeling OK, my docs seem to think that I am ahead of the curve, however that being said, I try to be positive but scared out of my mind at times with the "what if's". Lately I have had a really bad sinus condition as well as major tooth aches that everyone of my doctors and dentist seem to dance around because of the possability of ORN. I just had a CAT scan yesterday and got the good call from my ENT this afternoon so that was cool. As far as my treatment I had 33 IMRT radiation treatments and 3 rounds of Chemo (Cisplatin and another that i forget the name) I also had a neck disection ( that makes it hard for me to feel changes on my right side because everything there is still numb). My primary site was my right tonsil that had spread to one lymph node, I had 22 removed with the neck disection, The Radiation and Chemo did not totally kill that tough little bastard so the had to cut it out.
Michelle thank you for your encouragement what we do for each other is what this board is all about, there is great value in giving back and yet at the same time I am constantly gaining knowledge from most all who visit here, I hate one way streets, they always make me through up my hands with aggrivation. Thanks for being here.
always Lenny

Michelle,
I have a to add a word of caution here. You shouldn't be putting anything substances in your mouth or on your skin prior to a radiation treatment. It can have a bolus effect and enhance the radiation in very negative ways.

Many of us have kept all of our teeth and have no problems. I used dental trays with presciption flouride almost nightly and had no pain or additional nausea from it - who could tell anyway -almost everything made me sick when I was deep into it. The possibility of ORN was 10% when I researched it 3 years ago. Brian has found that the ORN risk numbers has decreased substantially since data has started coming in about treatment with targeted treatment modalities such as IMRT, 3D conformal or Tomo CT.

I also discovered, in my travels, that some persons get ORN despite having all of their teeth pulled.

The teeth and gums have to be in good shape to start with and it is risky to have extractions after treatment. Constant flouride treatments and rigorous dental hygiene are a must for the rest of your life. I used a foam type, with a neutral pH and I tolerated it well - even with all of the mouth sores.

As far as the tooth question, it depends on where it is. If it is directly in the radiation field I would hazard a guess that they would prefer it to be healed up first. Even with a neck disection I believe that they allow about 2 weeks prior to starting radiation.

After she gets fitted for the mask she will go through three more phases, a C-arm xray (usually during mask fitting), a CT, then they have to program the software, so there will be a lag from the mask fitting to start of radiation of about a week and finally a simulation on the actual LINAC.

Michelle, I had two teeth pulled prior to radiation because I had periodontal disease there and they would have had to be pulled anyway eventually. They weren't abcessed or anything and I healed fast but my dentist and the radiation oncologist still felt I needed 3 weeks to heal from the time the teeth were pulled to the first day of radiation. They can't do the Xray or the CT for the radaition plan until she has her tooth pulled because having a gap there affects the radiation plan.

As for the flouride trays, as my mouth got sensitive to just about anything during radiation, I stopped doing the flouride trays because it burned my mouth. But I'm back to doing them now and know I'll have to do them for the rest of my life.......

You didn't mention if they are recommneding chemo for your mother. If they are, I'd strongly recommend she get a PEG tube while she's wiating for adiation to start since this can be a real lifesaver if the chemo and radiaiton combined make her mouth too sore to eat.

Thank you all for responding.

Great news Lenny on CT results. Hopefully that has eased your mind and you can continue to heal.

We meet with the RO next week. I can tell you I hate the waiting game.
Thanks Gary for your information.

Can anyone explain more about the radiation phases. I am sure I will find out everything next week. What is the C-arm xray and the simulation on the actual LINAC? Do they do another CT?
These flouride treatments, are they to be done everyday while you are getting radiation?

Sorry for all the questions.
I work in the medical field as an RN but I am not familiar with radiation. I work in a hospital on a Telemetry Unit and I just started a new casual position with hospice.
Thanks Nelie for your informaiton. Hope things are going well for you.
They have not mentioned chemo.
I have my list of questions for the RO.
I will be bringing up the peg tube and see what he suggests. My mother's tooth was pulled on opposite side of the cancer on her tongue.
I am not sure if they are going to radiated the entire tongue or just the one side. Does anyone have any idea. Her CT of neck was normal but I am pretty sure they will radiated the one side of her neck, cancer side of tongue.
Like I said before in 1986 and 1988 she had SCC on tongue with just surgery. In 2003 dysplasia and surgery again. So with her history just wondering if they should radiate both sides of neck???
Looking back she should of had a Pet Scan done prior to any treatment. I remember asking the RO when we first met with him about PT scan and he mentioned not at this time because I think he was thinking the ENT dr. was going to take some lymph nodes out and check them. Then the ENT dr. said he was not going to remove any lymph nodes because CT was normal and they were going to do radiation anyhow.
I am going to request that she have a Pet Scan and a chest xray. She is 4 wks post op from surgery and had the one tooth 2 days ago. See the RO next Wed. We would have seen him this week but he was gone this week on vacation, I guess.
Does anyone think they would be able to do the Pet scan prior to the start of radiation or will that be to soon?
Thanks again everyone
Take care
Michelle

Michelle, welcome and don't stop asking questions. The learning process just never seems to end around here. Fortunately there is a wealth of wisdom to provide answers.

Flouride treatments will likely become part of the everyday dental routine. In my case, my oral surgeon told me to do it every night just before bedtime, forever. Like the others I did have problems doing it as the treatments progressed. Now that they are done and my mouth has returned to its new normal there is no problem anymore.

As for the phases of the radiation treatments, likely only the RO will be able to give you a definite answer. If my memory is correct, they use a CAT scan machine for the simulation, while making the mask and applying the first alignment marks to the mask.

I can tell you that the first week or two are not bad at all. After that the cumulative effects kick in and in some cases life begins to get miserable. Each and every one of us has a different story. I was radiated from the left, right and front during every treatment.

Rest assured that I will be looking forward to progress reports on your mom.

Bill

You haven't mentioned the type of radiation so I will give you both scenarios:

IMRT:

The c-arm is done usually just after the mask fitting to set up preliminary site lines for the radiation beams in relation to the mask geometry. It is called that because it is in the shape of a "C" and can mimic the movement of a LINAC. It's just a specialized x-ray machine (they are used for other applications as well and can even be portable on wheels). I am not sure if they do the C-arm for XRT. Here is a link to a fairly technical article on the C-arm:

http://www.ece.jhu.edu/Seminars/Ramamurthi%20Defense.htm

If she is getting IMRT she will definitely get a CT as part of the programming protocol. They usually also do a 3 week CT to see how the response is and make tweaks in the programming if necessary.

Simulation is done just prior to starting actual radiation. They put you on the table, in the mask, and do a dry run to insure correct programming.

If she is getting CT/XRT (chemo therapy/standard radiation) then the information is this link is very thorough:

http://www.jco.org/cgi/content/full/17/3/1020

It was done in 1999, 7 years ago and a lot has changed since then, but then much remains the same. It is also a study of CT/XRT only, without surgery.

You remember that we all respond differently to treatment.

When you can get a PET scan is up to your health care provider. I got mine within 2 days of the order, but I have an HMO.

They should also do a baseline TSH test and a hearing test if she is getting Cisplatin.

I didn't do flouride every day - 2-5 times a week. I am sure you will get many different answers on that depending on what people were using.

The best advice I could give would be that before having any procedures involving the mask, make sure you ask the RO/radiation techs to let you know a day ahead how long your mom can expect to be "on the table" with the mask on. This was a major source of anxiety for my husband, because after the second time of his being on the table for a longer time than just the usual treatment time (including initially when they first set up the marks), we asked that they let us know ahead so that he could take a Valium beforehand. The next 2 times they did let us know, but another time after that, they failed to and he was on the table for an hour in that mask. If your mom has any claustrophobic issues at all, she may want to prepare for the longer times by taking some medication.

We also found that after they did a CT scan, the next day they did "films" while he was on the table which involved a lot longer time. It wouldn't hurt to ask everyday at the end of treatment what the next day's schedule entails.

Hope this helps. Best wishes to your mom for getting well!

Michele