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#80873 09-21-2008 11:58 PM
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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, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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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


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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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


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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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).


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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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.


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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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.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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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.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
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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.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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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)

Last edited by Ray1971; 09-23-2008 04:07 AM.

7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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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.


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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