Okay, I don't know if anyone can help me with this but here's my problem (besides being awake at 2 am). I am hungry ALL the time and normally that wouldn't be a problem but it is out of control. Before I go into any further explanations, I have appointments in the next week with my MO, RO, and ENT so I will definitely be asking all of them about this as well. Okay, so, I eat probably every few hours during the day, and not just little snacks, but actual meals for the most part. I wake up around 8 and drink a carnation instant breakfast, then I will eat again at 9:30, 11:00 (lunch), 2:00 (snack), 3:30 (second lunch - apparently I'm part Hobbit), 7:00 (dinner) and then maybe one other time in the evening but that is usually just ice cream or something. If I go any longer in between meals I get really light headed and start to feel really bad - and I'm eating good food, veggies, oatmeal, etc... I'm really careful about making sure I eat a lot of protein and such. I know I am healing from surgery and treatment and all but it's just been the past couple of weeks that this has become a problem and my surgery was in May and treatment ended 2 months ago almost. So, any advice would be greatly appreciated.

Stephanie,

Do you have any idea how many calories you are actually eating per day and how much protein? Also, how active are you? Have you been seeing a nutritionist?

I'd suggest a food journal for the next few days to track exactly just what you are eating and drinking. Maybe you simply aren't getting the calories and nutrients your body needs.

- Margaret

Stephanie- Your blood sugar could be a little wacky right now. I'm sure your doctor could run some tests to rule that out. Are you gaining weight or just maintaining?

Sue

Stephanie,
When I was using the PEG I had absolutly no desire for anything other than one morning when I wanted some strong coffee. As soon as the thing came out, I had the appetite of a 17 yr old boy. I ate and ate. I even began taking a lot of sweets which I normally avoid because I am hypoglycemic. I continued to loose weight very slowly for a long time (about a year).

I'm almost positive I am getting plenty of calories every day, I don't write it all down but I do try and keep a running tally in my head as the day goes on - and when I am eating I am eating farely normal sized meals. I haven't been very active lately - just physical therapy and going for walks and stuff.

Malka - I have definitely been more hungry since the peg tube came out last Monday, so maybe that's it, I wonder why that is. How long did that last for you (that whole year?)? My mom is also hypoglycemic and hers was triggered by a surgery.

Sue - I have been maintaining my weight, no gaining, no losing.

If you're not gaining then I wouldn't worry assuming the blood work checks out. I am eating way more than I used to, sweets included, and I'm not gaining a pound and I'm over 2 years post Tx. I used to look at a cheeseburger and I would gain a couple of pounds even riding my 100+ miles a week. Now with the same riding or even less some weeks lately I eat more and do not gain. Got to be something with the thyroid? That's my uneducated guess.

Its good that you are maintaining your weight. You are still healing and it takes alot of caloires to do that. For a few months I had been consuming 4000 to at least 6000 calories per day. I was fortunate that I didnt gain a ton of weight with that kind of intake. That was 10 months post rad/chemo and 2 months post surgery for my recurrance. One thing I noticed with the peg tube was that I ate more frequently and smaller amounts. Even though it may just be your body's way of healing, check with your doc about your thyroid. Some people here have had thyroid problems.

I had a pretty good appetite after I was able to taste and swallow again and pretty much ate anything I wanted with impunity for about 4 years with no weight gain. Then I seem to put on about 3-4 lbs every 6 months ever since. I actually may have to start watching my caloric intake and exercise more. The docs are happy about it but I like being on the thin side.

My RO told me a common side effect from radiation is the inability to gain a lot of weight after rad txs. Sometimes the thyroid corrects itself, over time. He also told me it doesn't necessarily mean you have to take meds for it. A family friends son from Church had OC and he went from 185 lbs. to 140 lbs., weight that he could not loose. He's since gained about 25 lbs. and feels good. Just some info that was related to me through two different sources.

best wishes

(as a previous post said...a food in-take journal and seeing a nutritionist experienced with post rad txs would be a good)

Thanks for all the advice everyone! I have an appointment with my MO tomorrow so I'm going to bring it up then. I haven't been used my feeding tube for about a month and a half and I had it out last Monday. During that time of not using it, but still having it in, I would get hungry, but it was nothing unusual, I would eat and be fine. In about the past week and a half or so is when everything has started going down hill with getting light headed (to the point of losing my balance) and feeling horrible if I go too long without eating (like 2 hours). I wrote down everything I ate yesterday and got close to 2500 calories, which I was getting 2000 all during treatment and was fine. Oh well, hopefully I'll get my answer tomorrow! And I do have a nutritionist so I may be popping in to see her tomorrow as well.

Hi Stephanie- It could be your thyroid gland. sometimes it gets damaged in radiation and that effects the metabolism so make sure they check that out. Most likely its just your body wanting to get nourished and get back to a normal weight and get extra vitamins and nutrients. I ate like crazy too once I was eating solids agin. The other thing is that you are eating differently so your body is adjusting to that and maybe working harder.

When I get below 100 I woudl come home form work everyday and make cupcakes... can't do that anymore but it sure was a blast while it lasted.

Good luck at the Dr. Tommorrow KATE

hey good luck with the eating thing...me I would show it I bet ...i am sure the doctors will have answers for you and it will all make sense. you are still here and making an impact and that is what is important...you can have my portions if you like :))

Apparently, hypothyroidism will strike many of us in the years following X-ray therapy, so it's something to keep in mind for the future:

http://www.oralcancerfoundation.org/facts/hypothyroidism.htm

So today I played a little round of stump the medical oncologist. Haha. He referred me to an endocrinologist because he couldn't make any sense of my symptoms. Good fun. So now I get to add another doctor to my list! Hopefully they will figure something out for me! I love being the medical oddity (ha, not really)!

Pete- unfortunately hypothyroidism doesn't really fit my symptoms. An over active thyroid fits but I know that it is more common for someone's thyroid to get fried, not sped up from radiation, right?

Not true. When my thyroid went south after my surgey in 2001, I found myself eating everything in site and not putting on any weight. I wasn't eating every two hours like you are, but I normally eat 'like a bird' and I was putting away huge portions for me. It's a simple blood test and make sure they get a full thyroid panel including TSH. This should then be compared to your TSH level prior to radiation.

Take care,
Eileen

Not all thyroids will fit the standard symptom descriptions and if you read them carefully, you can see some of the same symptoms listed for both hypo- and hyper-thyroidism. I've had TSH as low as Zero and as high as 80's in a relatively short span of months with no discernible change in symptoms -- This is Art, not Science!

My 18 year old daughter has hypothroid and Hashimoto's as does my mom. Sometimes the thyroid will have what they call a storm before it completely shuts down.

Sue

I had my appointment with the endocrinologist this afternoon and I finally kind of got some answers! He does not think it is related to my blood sugar, but I am testing it anyway over the weekend to rule it out. Basically when I am feeling awful I have to test my blood sugar and give him a call on Monday to let him know. He really thinks that it is something like a nonautoimmune disorder, basically related to my pulse and blood pressure being crazy (he thinks it might have been caused by my neck dissection). This is because my pulse when sitting up is 120 and when I lay down it is between 89-92. He didn't check what it would have been if I were standing because he assumed it would be insane. First we are going to rule out the blood sugar issues, or confirm it and then we'll go the other route with more tests for that as well if it isn't my blood sugar!! I checked my blood sugar when I got home from the doctor (I was feeling bad) was 88, so in the normal range. We'll see how it goes over the weekend. Thanks to everyone for your input and advice!!!!!