I'm 62 1/2 years old, smoked for eight years including a pipe (quit in 1970), and quit drinking alcohol about 11 years ago.

One of my life's goals was to never meet an Oncologyst professionally and I've just failed that one. Since 1990, I have had a series of negative biopsies done from a suspicious area under my tongue, but recently a tumor popped up, was removed and was bad, but had not spread to lymph or blood system -- A CT scan was negative, so my ENT went in again and excised a much larger area, down to clear margins.

He recommended that I do the radiation treatment as a preventive measure -- The way he put it is "The monster came at us out of the dark and we put it down with one barrel; we can wait to see if it gets back up or we can give it the other barrel right now" -- Everyone I have talked to in the medical field and former patients has recommended getting the treatment now, so I start on Monday.

Since I'm going with the recommendation to also take the Amifostine, I had my PEG inserted last week (that's two partial glossectomies and a PEG in the last four weeks) and I had my mask done last week also.

The PEG logistics are a bit daunting -- I need about 2,000 calories and one bottle of Ensure gives 250 cal in 8 oz -- That's 8 bottles and 64 oz per day -- Since the syringe they gave me is only 2 oz, that's 32 syringe-loads... Plus the water...

At least I'm having a little fun playing with my CT scan on my laptop.

Pete

Pete,
That's a rough Thanksgiving present you were dealt! I hope things go smoothly for you. As for the 32syringe salute, I would go with the bag method, fill the bag with Ensure, attach the tubing to your peg, turn the stopcock on, power up the laptop, your hands are free to do whatever graphic manipulation of your CT you want, the food drips in (slowly, so you don't get nauseated) and you don't get those nasty syringe callouses on the palms of your hands.
Best wishes for a full recovery, a smooth voyage through the radiation ride, and ohbytheway a Happy Thanksgiving!

Andrea

Hi Pete,
and welcome to the forum. I was Dx'd 3 years and 2 days ago and went through treatment about the same time you are. It's actually not a bad time of year to be treated. I agree with your doctors - hit it with all you've got.

I quit smoking in the 70's myself and drinking in 1995. I too never thought that I would have an oncologist for a regular doctor.

Just wanted to wish you the VERY BEST in your treatment and recovery. My prayers are with you!!!

Hi Pete,

You might want to see if your insurance will cover the special cans of stuff that are designed to use with PEG feedings--what I use is called "Jevity" but I think there are others. The dietician at the hospital where your PEG was put in should know about these and how to order (we ordered through our local medical supply company). These drinks have more fiber than drinks like Ensure and way less sugar. You'll find that more fiber is especially important if you find yourself needing prescription pain meds during the radiation, since they constipate. You'll probably need a letter of medical necessity from your oncologist, saying you can't eat normal food, in order for insurance to cover it, and I think some plans don't cover it at all but I have a fairly average blue cross/blue shield plan and they did cover it.

My thoughts are with you during your treatment. As you can see from my signature below, I also followed the empty both barrels approach although I had an early stage cancer (or was that three barrels I emptied since I had chemo too ?) It's a hard fight but lots of us here have been through it and are here to support you if you need it.

Nelie

Welcome to OCF Pete. I wish there had been no need for you to be here, but now that you are, use us for all you can.

I am very near the end of needing my PEG. I have a rather large supply of 60cc syringes that are yours for the asking. What I have done is to remove the plunger from them and just use them to dump the Ensure into the PEG. I was on 10 cans a day and did it by doing 3 for breakfast, 1 mid morning, 2 at lunchtime, 1 mid afternoon and then 3 more for dinner. Each "meal" was followed by about 200cc of water to flush the PEG.

Send me an IM if you are interested in the syringes. I can get them in the mail to you as early as tomorrow.

Bill

Hi Pete! Sounds like you made a good call to go after the beast with the other barrel. It is a sneaky devil - prone to get back up... I've lived by my peg tube for two and half years now. Jevity and Ensure are made by the same company and are nearly identical in content. Ensure has no non-food sugars in it, so don't worry about getting too much. The easiest and cheapest place to buy Ensure is Wal-Mart. Its a stock item for even their medium size stores, and they can order and stock just the ones you want.

The PLUS products have 350 calories per can - saves both time and money. For further savings, buy some of the store brand (equate at Wal-Mart). The contents are identical, and the generic is a ton cheaper - just less fancy package. I use a 60cc syringe to eat. It kind of hurries the stuff into my stomach, and lets my system maintain a bit of a schedule for 'eating'. During tx I poured in two cans at a sitting, four times per day. Now I can maintain my weight and strength (185) with 7 cans per day.

The fiber idea is a really good one. I use Benefiber. Buy it at Wal-Mart in a big green plastic jar. It dissolves pretty completely and pours into the peg without blocking. I usually have most of a 20oz bottle of water at each meal, and I pour about 2tsp of Benefiber into the water bottle at each noon meal. You can take more or less depending on the way your gut reacts to the drugs. I continue to consume the fiber just for gut health now - 2 years post tx.

The buzz in the waiting room at the radiation oncologist's office was: Double your water intake during tx, cut your tx side-effects in half. It worked for me. Dehydration is a real risk during chemo and the 'ray gun' doesn't help at all. And hey, while you are laying there, with your head clamped to the table, think about all the cool things you can do with the mask when tx is over!

You can do it Pete. We are with you. Tom J

Hi, Pete. My husband [same age as you] used 2Cal HN in his peg tube. If memory serves me right, it had 450 + calories per can, which cut down on the number of cans per day. It is by perscription only and is not cheap. However, it is what our Doc specified for him. Our 19 mo. old grandaughter runs around the house with John's mask in front of her face,saying "BOO". Wishing you much luck in getting through this. Amy

This is a great group -- I'm on a couple of other groups for other subjects than this dark-sided one and it's amazing how much knowledge we have when we link and share.

I was back to my ENT two days ago and mentioned that when I went for my Plan Mask (I think of it more like a Texas Chainsaw Massacre Mask and wish I thought to bring my camera), after the techs set up the Firing Plan on the mask with tape and the CT scan, they marked my chest with a pen, put a bandaid over it and said "Don't wash that, it's important!" (Duh! Of course it's important because it is the base reference point to link the mask to me exactly right, so a shot at the mask will hit the right place on me!) I asked about a tattoo and they said "Oh, you'll get that at your first treatment" -- "Why not now? Sez I" and they said something to the effect of that's the way we do it because we don't want to leave you on the table too long in your mask.

Then we went out and they found out my schedule had been changed to after Thanksgiving -- I asked if the ink was really going to last that long and they started giving each other those silent questioning Uh-Oh looks -- I just said, get the mask, put me back on the table and we can do the tattoo right now while we all know where every thing is -- I don't want melted fillings or whatever -- So we marched back in, laid me down and as soon as I could see the tech approaching with the needle I started hollering Ow!! Ow!! -- Payback is fun, altho I think she just tattooed it all the way down to the bone, because payback is a two-way street <g>

My ENT laughed about the whole thing and said that altho they are supposed to be the experts, it's also my responsibility to keep an eye on what's going on and to question what doesn't seem to make sense -- I can already see from the staff at the Radiation/Oncology Center that they are used to most folks getting the double whammy of radiation AND chemo and have tailored most of their approaches to that.

Pete

Pete,
Keep up the great attitude! It comes through in your posts. I may be fooling myself, but I'm convinced that a good attitude and a sense of humor went a long way in helping me through treatment and recovery.
Your ENT is right. They may be the experts, but they're also human. Stay involved. Don't just lay there and take it. Best wishes for your upcoming treatment.

Good Health,

Chuck