I recently underwent surgery as first phase of treatment. Next part is schedule that is radiation. What I have understood is out of this forum, daily calories intake and 48oz of water is a must.
I was 126 lbs before surgery and now today I am 116lbs. Meaning weight loss of 10lbs during the surgery. I am going to see oncologist soon, my question is, do I need PEG while I am on a radiation treatment for 5-6 weeks?
Here is my situation, I have very good apatite, but still swallow is a little challenge due to swelling and passive muscles in throat due to surgery which are recovering anyway. I am not still on a solid food. All purified food backed by Ensure to maintain daily calories.
My concern is, does radiation makes swallow tough? I am scared because I am a skinny guy and so less fat, less muscle and less water composition in a body. Can any one tell me if RO will suggest if I need PEG or not? OR do I need to approach for PEG to maintain regular calories intake?

Is radiation a horrible thing? I mean worst to get? I read here that people self drive for the treatment on a daily basis. But does it bring fatigue, nausea, or loss of apatite?

Thanks

Not everyone is able to get thru rads driving themselves. It isnt safe to drive if you take strong pain meds. I gave up driving about my 2nd week as I was taking some heavy pain meds and traveled close to an hour each way to the hospital. The American Cancer Society has volunteer drivers that can help drive you. It takes a couple weeks to get this in place. Hopefully there will be someone in your area able to help. Call them right away to get the ball rolling. They are available 24/7/365.

To get a feeding tube or not is a decision you and your physician can discuss. On the forum, you will hear from each side strong arguments encouraging you to do what the person commenting found effective in their situation. Years ago this was known as the PEG wars as there were some heated arguments going on this subject. I had a feeding tube so I advise its always better to be prepared. Having a PEG tube even if you dont need one is so much better than needing one and its not there then you need emergency surgery to get one. It couple be days before you get one (even in an emergency) and if you are in seriously struggling then days can seem like an eternity. You can also get a nasal tube which is more temporary and does not require surgery.

How you respond to radiation depends on you and cant be predicted. Some lucky patients sail right thru (usually those without chemo) while others struggle almost from day one. Your intake will play a huge role in how well you get thru this. The better you do with your intake the easier it will be. Fail to maintain enough calories and water intake (even over a couple days) could be enough to land you in the hospital for malnutrition and/or dehydration. It happened to me a couple times and I can honestly tell you I felt as though I was in the process of dying. I felt so sick I was certain the end was near, but thats only because I was severely dehydrated and malnourished (and that was WITH having a feeding tube). Having a good caregiver will play a huge role in this as well.

I suggest you read over the hundreds of posts other members have written about the same topics you asked. The info is readily available by doing a easy search or if you read something many members compiled called "The Getting Thru This Project". I believe its the very last tab on the main forum page. Thats is many pages of things that patients and their caregivers all wish they had known prior to starting their journey towards eliminating their cancer. An informed patient is a stronger advocate for themselves and will get thru this easier. Knowledge is power!

Best wishes!!!

Ankur, those are all great questions and I'll give you my opinion on a few of them.

1. PEG or not: I chose not as I was having a bit less radiation than many people get (5500 I think I remember). But by week 4 I wish I had gone for the PEG because the sores in my mouth were so plentiful and painful that it was all I could do to get maybe half of the calories I needed per day from liquid nutrition. I lost about 30 pounds overall of which maybe 8 or 9 was from surgery and complications. So...

2. Definitely eat everything you can now before radiation. Eat even if you're not hungry and don't spare the calories!

3. I drove myself, maybe 35 minutes each way. But only because there was no one else to do it. If you can get a friend or relative to take you I would recommend it. Certainly for the last few weeks.

4. Don't tolerate the pain. If you're in pain there is medication to deal with it. Be proactive with pain because it can really impact how you deal with what you need to have, i.e. radiation every day. Of course as anyone here will tell you, we're all different. What's bad for one person might be quite tolerable for another and you might end up with less discomfort than many here. You sound as though you have a great attitude, so I know you'll face it all with courage and a good heart!

5. Assume you're had your teeth checked, and fluoride trays made? Ask your RO if not. Ditto having your thyroid levels checked as these can be affected by radiation (as mine were).

6. I'm sure there's lots more that others will weigh in on.

I send you all my best thoughts and courage!

Ankur, can you please add to your signature so we can tell whats coming up with your treatments? The signature really is a huge help to us when we attempt to answer your questions.

Thanks!!!

PS..... Dont worry! We will help you get thru this!!! Its no walk in the park but it can be done. If I can do it, you can too

I had 6 weeks of chemo and 7 of radiation . Without the peg I would have been in the hospital. I still managed to lose 10% of my weight.

I stopped treatment on the 22nd and I still haven't been able to eat orally. Not that I am afraid of pain, it's the throat is still healing, why would I want to scratch/damage it.

Brian

Hi there... A peg is a fifty fifty thing.

Picture this... you have a shattered leg. The nearest help is 5 miles away. Can you make it there on your own?

Radiation runs the gauntlet from VERY BAD to excruciating. I fit into the VERY BAD group, some hit excruciating - most sit in the middle of that.

Ask yourself this.

1) can I force myself to eat even when I am in the worst pain imaginable?

2) how determined and self directed am I?

3) how am I with pain?

I told someone else this today. I did okay without a peg. I knew what I had to do (ingest 4-6 high protein high calorie liquid nutrition cans/bottles a day - by mouth - more if you are a man - stay hydrated - and try and take supplementary nutrition) I knew no one else was going to force me to do it. My hubby is a great guy but caretaker material he's NOT. And I am very very tolerant of pain. I still allowed them to put in a peg - but was unable to tolerate the feeds at all, so I had no choice but to get through treatment taking my nutrition by mouth. It was gross, and painful but doable.

If you don't have a high pain tolerance, and are not determined to force yourself even when it's brutally painful - and particularly if you don't have someone else to push you as well. Get one. You don't have to use it, but if you do need it it could very well be a lifesaver to have it already in.

With regards to driving. Pain meds are a factor, and distance too. My drive was maybe a half an hour door to door. I didn't take pain meds until the last two days of treatment, so I was okay to drive. So I did. Know your limitations and boundaries - and don't try to be a hero. If you need help say so.

hugs and good luck.

Thank you so much everyone for relevant input to educate me. I am meeting RO soon, and this will help to ask appropriate questions to him.

It all depends on a number of factors. If you're mouth, throat, eating, chewing ability is already compromised by surgery, which may effect your your nutritional status during treatment, other co-morbidities you may have, if already underweight or close to it, lose 5% of your body weight unintetionally, are malnourished, doctors feel you won't follow instructions on adequate nutrition, hydration during treatment, mental status, the dosage of radiation, where radiated, bilaterally or ipsilateral, and if having chemoradiation or radiation alone, your preference, your doctor's opinion, all factor in to get one or not.

I didn't have a peg during induction chemo, but due to the severe consequence of it, a peg was put in, and lost 110lbs. Actually, I don't even remember them putting it in I was that bad. I kept my peg, and for other treatments I still lost 40, 10, and recently 5 lbs, and used it to supplement my diet, although I'm peg reliant anymore, I'm not take it out since it can be a life saver, and was mine for a while. I had me 4 years now, and can eat everything. As far as losing your swallowing ability, you need to exercise your mouth, dry swallow, and the tongue, throat muscles have memory, like all muscles, so you get it back quickly. Losing your swallowing ability probably has more to do with surgery, and radiation depending on the dosage, where radiated, especially the BOT area, which is intracal in swallowing.

Hi Ankur,

I am a solider on the side of the NO PEG warriors. In your case, you do likely need to get one early. You have lost %wise a lot of weight already; it only gets much worse during rads.

No way to get around that rads are hard to get through. You must focus on hydration, nutrition, and pain management. Do all three well and you will get through with the fewest issues.

Good luck
Don

Nutrition is one of your allies in the battle against cancer. Hydration is another ally.

I have a peg and I hate it. But I need to use it. I still lost over 10% of my weight during treatment. There were some days when the chemo made me too nauseous to even think about feeding. But at least I could drip water slowly thru the peg to keep my kidneys and liver healthy.

My advice to anyone facing radiation to head and neck is the peg is a no brainer. I've done triathlons, was in the army for 11 years as infantryman, and done some other major intestinal fortitude testing on myself. I dare anyone to call me a wussy. But when the doc asked do I want a peg I said yes immediately. Why would I want to jeopardize two of my allies in the battle against cancer?

Just my two cents. My husband's doctors all suggested him getting a PEG. John was convinced he would not need it but got it just in case. Even with it in he lost 30 lbs. He was very stubborn in the beginning and wouldn't use it. Once he started using it his weight stablized. He continued to swallow water every day so he wouldn't loose the ability.

John had so much mucus that he was on two different types of anti-nausea meds. The mucus would make him gag and throw up and there is no way he could have gotten enough nutrition and hydration in by mouth.

PEG = another tool to help get you through treatments. You don't want them to have to stop treatments once you get started to place a PEG. It will take you a few days to recover from the procedure.

I hope you decided on the PEG. My husband is the affected person - his doctor pretty much insisted he get one with his radiation. Hubby insisted he wouldn't be using it, but did pretty much right away. It made a HUGE difference.

I called my husband from a bus in Bermuda last spring. The guy sitting next to me heard me mention the doctor in Boston -- said his brother had also seen him. I asked him how his brother was doing - unfortunately he died - partly from complications due to his refusal to get the PEG.

My husband did focus on proper eating ASAP and was able to have it removed in almost record time.

My son and I found OCF only after he had started Rad Tx. At that time, in a group consult with his cancer team, they asked him if he wanted a PEG and my son, my daughter and a nurse friend and I all answered together, "No!". (What did we know !?) At the time, my idea of tube feeding seemed like forever thing. The benefits were never explained nor that it could have been only temporary in order to help lessen the effects of radiation. Thinking back to the struggle Paul had and how I could see him suffer through treatment, I think a Peg could have helped him. He lost a lot of weight - I don't know how much because after losing 20 lbs, he was very secretive about how much he weighed. All I know is that his jeans threatened to fall on the ground every time he got up to walk into the Rad room for Tx.

It seems like the usual reaction to the first mention of a PEG tube is "No." That was my reaction a month ago too. But my primary care physician, my ENT, the head and neck surgeon, hematology oncologist, and radiation oncologist were all adamant that it is better to have it and not need it than to need it and not have it. The final opinion came from my sister - a registered nurse for over 25 years. She said "absolutely get it." I finally realized that I am not seeing all these doctors and asking them to help me save my life just so I can ignore their advice. So I swallowed my natural inclination toward stubbornness and got the PEG. I am not sorry I did so, although I'm only about a third through my rads and chemo and I only use it for hydration so far.

Listen to your doctors (and your sister if she is a nurse). You may never have gone through this before, and you don't like the idea of the thing, but they have helped patients through it hundreds of times. They really do know what they are talking about.

Well, just for balance. I am 100% in the don't get it unless/until you need it. I read far too many complications by getting one. Of course one needs to weigh the benefit against the downside.

Thank you so much everyone for candid opinions based on your experiences.