My dad was diagnosed with SCC of the rt tonsil 2/7/07. Met w/RadOnc on 2/14. He staged cancer at 2 with no node involvement, but possibly some cancer in uvula region. He recommended dad have 35 radiation treatments (5per wk/7 wks)and chemo. Dad had oral surgery to remove 9 teeth last week & he's done well with healing. He has already lost 40 lbs. since Sept. & currently weighs 130. He began using a morphine patch this last weekend to help control pain from tumor. He can hardly swallow now and feeding tube is being implanted this Thursday(out patient). Radiation begins Monday, March 12th. I live 2 1/2 hours away & my dad lives alone. He also has no health insurance & doesn't qualify for medicare yet. With that background in mind, I have a few questions for the members of this site: 1. In your experience how difficult is the feeding tube procedure itself& what are the major things to be aware of throughout the duration of implantation? 2. Radiation treatments-Based on your experiences could the person receiving treatments stay by themselves throughout the duration? (dad doesn't want to "disrupt our lives") At what point during treatment did it become severely painful? I am in the process of organizing a schedule of friends and family to be available to help every day of the week if/when necessary and any info. you can give me would be greatly appreciated. THANK YOU!

Hello Goldlox,

I am glad you found this site, but sorry for your situation.

To answer your questions:
1) I had a feeding tube inserted in the 3rd week of radiation because I was loosing 5 lbs a week. The surgery to insert the tube is very routine. The tube I used had 3 ports. One for primary feeding, one for meds and one controled the saliene in the bubble which holds the tube in the stomach. Your Dad's doctor should inform you of how many calories he should be consuming daily. Typically it is 2500-3000 for men, but your doctor will know best. I used 7 cans of Ensure a day followed by water to flush the tube and keep it from clogging. The people who install the tube should provide you with all the directions for feeding, bathing with the tube and stowing the tube (i.e. taping it up) when not in use. When I got mine, they gave me a big suringe to use, but I eventually pulled the plunger out of it and let gravity do the work -- much easier. Nutrition is very critical to maintaining energy to keep receiving the treatments.

2) Staying by yourself depends on how regular and disciplined your Dad can be at feeding himself with the tube and taking care of the effects of radiation(pain meds, skin cream, etc.). If he can't feed himself with the tube, someone will need to oversee it daily. I was lucky in the fact that I did not take pain meds during radiation other than the magic mouthwash people talk about on this site to numb the pain in the mouth, specifically the tongue.

I can not stress the importance of nutrition throughout this process. It can affect the treatment schedule. If you dad becomes weak from the combined effects of not getting enough nutrition and the radiation/chemo wear and tear, then he will not be able to drive. I drove myself to 95% of my appointments. There were a few bad days where I had some help.

Take care and tell you Dad to fight hard!

Jim

Goldlox,

I did not have the tube so I won't address that part of your question.

Everyone can react differently to the rad Tx and certainly age and overall health going into the Tx can make a difference but generally the rad will begin to affect him beginning around the 3rd week and culminate about 3 weeks after Tx ends. The weeks post Tx are always the worst. If I were you I would plan on having someone available during that time to assist your dad. He will not feel like doing much for himself and probably won't be able to drive himself safely to and from the Txs.

Hydration and "food" are extremely important during and after Tx. I was told 48 ozs of water a day, every day and 2000 cals per day. If he's like most of us he won't be self motivated enough to keep up without someone there to nag him. I found Carnation Instant Breakfast VHC which has 560 cals in a 8oz can to be a lifesaver.

Hi, Goldlox, you got good info above and I will echo that it isn't hard to use the tube for feeding [gravity worked best for John] but the Motivation to eat is often lacking, Plus the fact that someone needs to keep accurate records of the amount of calories and liquids being consumed in a 24 hr. period. If you Dad ends up on strong pain meds during rad, or if he just doesn't want to be fussed at for not eating or drinking,and does not tell you the truth, he can get himself in big time trouble. Since you probably know him better than anyone, you will have to make a judgement call about that. Since rad. side effects are different for everyone, you'll just need to keep a close eye on him as tx. progresses and assess his physical condition. Good luck, I know it's hard to be so far away from him during this. Amy in the Oz.

Goldlox,

Welcome and sorry that you are here, but this is the the right spot to be for oral cancer issues. You already have some great advice above...but I'll toss in my 2 cents.

Once I felt bad enough I wouldn't have eaten or drank anything if my wife hadn't said to do it, got it ready and put it down my PEG. Not that I was lazy, but I just wanted to lay in bed.

If you can take the time and be with your Dad especially after the 1st 2 weeks or so. That's when the side effects started setting in with me. I traveled to Texas for my treatment and I had my wife, son and brother with me. I wasn't the best patient then but I'm so grateful that they looked after me.

I know your Dad doesn't want to disrupt your life, but if I were you I'd let him. I wished I had let my Dad disrupt my life more, but its much too late now.

Thank you Jim, David, Amy and Tim. I'm sure I will be on this site looking for information & support A LOT in the coming months. I did find out today that Dad's first chemo Tx is the 14th. Chemo and its effects I am familiar with as I lost my mom to lung cancer last May after a 2 1/2 year fight. You've already given me so much great advice-I am going to make up some kind of medicine and nutrition log for everyone to use & pass on all this info. to my siblings & friends. Bless you all.

Despite what your Dad wants, this will disrupt your lives -- big time! It is a VERY VERY SERIOUS issue, a very very rigorous treatment and there are many places where things can go wrong.

Most of the posters above emphasize the issues with nutrition and hydration. The fact that your Dad has already lost a large amount of weight does not bode well for his getting through this easily. Most people lose a lot of weight even when they start out a bit "bulked up" (my husband was told to add as much weight as possible in the 3 weeks before he started treatment and he managed -- through use of high-calorie "shakes" etc. -- to pack on about 10 pounds. Even so, despite eating pretty well all the way through and my careful oversight and calorie-counting, he lost 25 pounds, and it has taken him 18 months to get back to his normal weight.)

What I am trying to say is that your Dad will probably need a lot of physical and emotional support going into this. You and the est of the family will need to help him interact with doctors and nurses, ensure proper nausea and pain control, and that he takes his medications (and does not overdose, he will almost certainly be getting some strong opiate pain-killers as he gets more into treatment).

The PEG is usually no problem, although sometimes it can cause reflux or stomach bloating, ask about Reglan -- metroclompramide -- which helps food move out of stomach. The PEG will need to be flushed daily even if not used. Make sure you and Dad meet with a nutritionist early on, before treatment starts, to discuss caloric and fluid goals per day. Also what liquid formula will be prescribed and how to use PEG. Meetings and updates with nutritionist should cntinue throughout treatment. Keeping a food/fluid log is very helpful.

Mouth sores will be a major issue, which is why he needs pain control. He should try to continue to swallow something, even if only sips of water, to keep swallowing muscles working. Otherwise he could lose the ability to eat by mouth for months, years or even forever. It would not hurt to schedule a meeting with a speech/swallowing therapist early-on to discuss exercises to prevent trismus (restricted jaw opening).

Your nurses will help with topical medicines to help with mouth sores and skin burns. These need to be used regularly. Sore mouth (burning etc.) can occur fairly early due to a yeast (thrush) infection -- this can be controlled by oral meds (Diflucan) and a mouth rinse with Nystatin, but will probably persist throughout treatment. However the real problem will be mucositis -- mouth sores like severe canker sores, all over -- extremely painful thus the need for the strong pain medication. Salt/soda rinses help with this.

Unless he was a smoker, his tonsillar cancer could very well be due to human papilloma virus (doctors feel tonsillar SCC could be a "surrogate" for HPV -induced SCC) -- this is probably worth testing as it can affect prognosis (much better).

What chemo will your Dad be getting? Be sure that he has adequate anti-nausea drugs --- Anzemet, Zofran or Kytril -- Compazine which is cheap is just not good emough for most folks --

There is a huge amount of info on the Oral Cancer Foundation web site (the web site itself, not the Forum) -- if you print this out it will be a good guide for all of you through the coming months...

Gail

Hello, and thank you, Gail. The installation of the PEG went well this a.m.-the medical center called me to let me know. I am heading to dad's right after work today. A home health care nurse is coming tomorrow to go over everything related to the PEG with dad & the family. Everyone who has posted so far's emphasis on the nutritional aspect of Tx has me prepared to be pushy w/dad if I have to be to make sure he stays hydrated and eats. He's used to doing everything himself & not having anyone tell him what to do, but we'll cross that bridge when we come to it. I do not know anything about the chemo other than he is starting both radiation and chemo on Tuesday now. When I get there I will review all the information he's received, etc. and call the doctor tomorrow if I have to for details. My dad's cancer is probably related to smoking-he's been doing it for 50 years-never quit until now. I know my mom had compazine and it didn't work all that well. I believe she ended up using Zofran. Thank you so much for your assistance-I can ask about the Reglan tomorrow when the nurse is here. I will post when I have more info. on his chemo. Goldlox

Goldlox,
Heed what Gail says! He will lie about his nutritional intake and have problems keeping his meds on schedule, not to mention how is he going to get to doctors and treatment? He's not safe to drive if he is on opioids - and he WILL be on opioids.

I've heard this "don't want to disrupt your life " stuff before from elderly parents - don't believe it. Plan on an extended leave of absence from your job or paying for a full time caregiver. Coming in, realistically, at the middle of treatment (2-3 weeks). It could be 2-3 months, post Tx, before you can trust him on his own (figure 4 month total committment anyway -assuming there are no complications) and that is also assuming that is was in good health to begin with (unlikely for a 50 year smoker who has lost 40 lbs and not even started radiation yet - which will make the surgery look like a walk in the park).

Start organizing a team as soon as you can. Does he go to a church, do they have an eldercare ministry, friends, relatives, siblings, neighbors, local ACS chapter? You will need all of the help you can get.

How's he going to pay for this stuff? I take it he's not retired? If he gets SSDI, after 2 years he will automatically get Medicare but in the meantime, typically, the state will cover the bill and take whatever property he owns for repayment. If he owns no property then the public health system may pick up the tab. When I was treated the RT bill alone was 1/2 million. Zofran can go as high as $40 a pill!

I am sorry to paint such a dark picture but you can't afford not to be realistic about this disease , treatment and its implications. I've had to deal with lung cancer 2 times - sister and stepmother and H&N cancer is a whole different animal. He will require real time management.

I had to be hospitalized twice just for rehydration and I was in good health going into it.

We're here for you...

Hi, Goldlox, Just want to know where to send you my "nurse from hell" hat. Sounds like you Dad is the knid of patient who might need to see it. Good luck in this next phase. Amy in the Oz.