Hi,
I've floated around this website since September when, as a 59 year-old healthy, non-smoking woman, I found myself with a biopsy that showed positive for squamous cell carcinoma, ventral surface of the tongue. Because the lesion was small, 1 mm deep, less than 1 cm at the widest point, and 5 mm margins were taken all around, it seemed that I was safe at home! However, I developed a small swollen lymph node about 4 weeks after surgery. The impossible happened, and I was found to have metastatic scc!

I have been in contact with a couple of members of this board since this time, and both have been invaluable to me in finding doctors and an institution that I felt comfortable with in handling my case. After selective neck dissection surgery (no more involved nodes) and further cutting on my tongue with no residual cancer there (my least favorite aspect at this point), my doctors at MD Anderson decided that IMRT would be the best course as it is extremely unusual for a superficially invasive lesion to metastatize as this one did. Possibly is it more aggressive.

So now I have come face to face with what I have, or have had, and aim to endure what is now before me. I have not really recovered from my neck dissection, tongue excision (I am missing about a quarter of the left side of my tongue), but I am not feeling as bad as I did last week, having had the surgery, Dec 20, 2010. I am getting feeling back in different areas continually.

I know if I ask for advice on preparing for IMRT, I am likely to hear the message to "bulk up". I am trying to do that. I weigh more than I did last week already! But I'm a light weight, 5' 3", 112-115 pounds. Besides consuming food in mass quantities now, is there any advice out there on preparing oneself for this battle? I am going to be living in Texas (11 hours away from home) for that time. I am married, and my husband will fly in for long weekends. I do have a cousin and family living in Houston so that will help.
AnneO

Anne, welcome. Although I'm sorry to hear about your diagnosis I have complete confidence that you'll come through it with flying colors!

I didn't know what to expect heading into RT. I hadn't yet discovered this forum. So you're already ahead of the game. The bulk up advice is excellent. Having family around is also important. You didn't mention how you'd be getting to treatment each day, driving, public transit... walking? I drove myself the 45 minutes each way right up until the last couple of days, but most of the crowd I saw each day in the waiting room had drivers. So that's something you should think about.

Don't plan on doing much. Everyone is different of course, but I think most of us find that the therapy is very debilitating. After the first couple of weeks (which generally aren't too bad) I basically just managed to get myself out of bed, out to The Ride (as I called RT) and back home to flop back into bed.

I'm sure you've discussed the issues of pain management, burn management, nutrition and hydration and so forth with your doctors and their staff. Please ask any and all questions you can think of, both of them and of us here.

I could write a ton more but I'm sure others will weigh in with stuff I haven't remembered!

My best to you, I'll be thinking of you.

David 2

Thanks, David. There is a shuttle that goes to the medical center. Also at the apartment complex they have a vehicle which they will use to take you to appointments.

I just hope I can keep eating. No, I really have not discussed all those pain and other issues with my radiology oncologist. He was gone this week when I visited with the surgeon. This is a time of year where folks are taking days off.

I expect to receive a call from them next week, or at least that is what I was told.
Anne

Make sure you have pain meds and a ride to the pharmacy in line...they may not give you meds until you need them, but at least know WHEN you should ask for them.

I just finished my 25 IMRT's a little over a week ago and because I had no chemo (like you won't have) it IS easier...but still no walk in the park.

I sell on ebay and worked all the way through treatment but I did start sleeping 2 naps worth towards the end. I gave up eating and just did ensure at about 3-4 weeks (took 7 for treatment because of holidays) but I was still drinking/swallowing so no loss of the ability to swallow.

I ended up with the pain patch and hydroco...hoping not to need the patch but it is what it is. Had a mouth of sticky saliva, dry mouth very early for me because they hit the saliva gland first day and swelled it up and put it out of commission early. :o(

Do you have fluoride trays? You will need to rinse with salt/warm water and soda for mouth sores and sticky saliva.

My Dr. also suggested that I take 1 TBSP of honey 3 times a day - one just before treatment, one just after treatment and one 6 hours later. I did that for the first 3-4 weeks but quit when the honey hurt the sores. I do really think it helped...both in keeping the weight on and keeping my mouth healthy. Check google for manuka honey and radiation to see some info on it. Sure can't hurt! I don't know if the Manuka makes a difference or not but I did find some locally and used it.

They will give you some "mouthwash" that will have numbing power to use before eating and for pain...I used it but didn't particularly like it (maybe it just didn't work well for me?) and that is why I went to drinking...the Ensure goes down pretty well for me. Keep your teeth brushed as much as you can - even just with warm water - helps the sores stay clean/healing.

If there is anything you can think of to ask, please do and I will be happy to give my opinion! LOL No charge! Just can't think of anything else right now...

They will make a mask and probably a mouthpiece for you to wear. I did OK with those but you can get meds to make it through if you get stressed being locked down.

Good luck and ask away!

Michele in IL

Thanks, Michelle.
I'm sure everyone has to find his/her own way to a certain extent.

I have never been very tolerant of mouth pain, only have one restoration in my mouth however. Who'd have figured I'd be resistant to tooth decay but not to oral cancer?

I know lots of folks swear by honey's properties. I think I will look into the Manuka honey and take some down with me in case. I don't mind drinking Ensure. I love making smoothies, but I wonder if the fruit will be too acidic?
Anne

While bulking up make sure you consume and savor all your favorite tasting foods.

Also get those Fluoride trays. I'm almost 5 years out and I still use them almost every night. I had perfect teeth going in and I still do, well except they are 5 years older.

Hi Anne, welcome to OCF. You will find that this site has tons of info both here and on the main pages. Both areas have a search function.

Bulking up is the best thing to do. Drinking chocolate milk will help you put the weight on. A pint is 400 calories! When battling cancer, dont be surprised if your intake is over 3000 calories daily and you still have trouble keeping the weight on. Eat all your favorites now, your sense of taste will change. Eat it all then have seconds Cheesecake, hamburgers, mexican, chinese food or even a big juicy steak, they all will taste different after a couple weeks of radiation.

Its a good idea to get your thyroid level checked now so that you know what is normal for you. Also get your hearing checked if you are going to be having chemo. Cisplatin can cause hearing problems.

Get to the dentist not just for the flouride trays but also a good checkup. Any teeth that arent in the best shape will need to be taken care of before you start radiation.

Any questions you have, please feel free to ask.

Thanks, Christine, for the advice.
They checked my teeth at MD Anderson and said no problems. That's where I heard about the fluoride trays.

It seems so sad that food won't taste either the same or as good as before. Some folks seem to think they get some of their taste buds back I guess. A friend brought by chocolate meringue pie last night. I ate a fourth of it, then turned to the ice cream in the freezer.

I am a teacher, and will be at school next week trying to get long-term sub plans ready. My friends say that is one advantage I have going into this: I have dealt with middle school aged kids on a regular basis and survived! Believe me, there is some truth there, and I say that lovingly.
Anne

Your sense of taste will be altered. For a little while you will not taste anything or it will taste terrible. This is only temporary. When you take a bite of something you have always loved, you may not love it anymore. I did regain my sense of taste. After aprox 4 months post radiation I started to taste things again. But, my taste buds were on hyper sensitivity mode. A few grains of salt would taste like I poured the whole shaker on something. Same goes for my sense of smell, its still super sensitive. Im a little over 3 years post radiation and I can taste everything almost the same as I had before. I have other issues that prevent me from enjoying a nice regular meal.

Start lining up people to give you a hand. Make a list, dont rely on memory. When someone offers to help you, write down their name and number and tell them you will let them know later when you need help what they can do. This is very important as some close friends may disappear, maybe even some relatives. You will need help to get thru this so be smart and make the list of people. This way if you need a hand its easy to find a helper.

Anne, in re the taste issue... try not to be frightened by this. We're all different. We can surmise that you'll lose some sense of taste, but to what degree or in what direction is impossible to predict. For instance, for me water began to taste metallic and vaguely unpleasant. But other things, especially sweets, were fine.

I didn't use the magic mouthwash that many here speak of, but did rely on viscous lidocaine to numb the sores in my mouth and, theoretically, my throat. It got so bad that I had to hold the stuff in my mouth for up to 10 minutes to do any good. But then I'd always been susceptible to canker sores, so maybe I was more sensitive. Hard to say. In any event, although it may seem like forever, those side effects do go away!

I enjoyed your comment about surviving middle schoolers, btw. Great attitude!

Keep us posted.

David 2