| Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jan 2010 Posts: 142 | I never in my life thought I would have to ask this question. Like most of us I have needed to lose 30-40 pounds. I went through radiation and the surgeries and was only down about 7 pounds. I finished radiation on May 5th. Now I am down almost 20 pounds. Part of it is that I rarely get hungry and I have made an effort to not stuff my self. I feel like I am just going through the motion of eating. It isn't physical as I am extremely lucky I have very little dry mouth, loss of taste or pain. But I have no appetite for anything and nothing looks or sounds good. This is probably premature but are eating disorders a potential result of all we go through?
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer 1/18/10 Clr PET 1/27/10 Surgery found Perineural invasion 3/22/10 Began Rad 05/05/10 34 rads 8/19/10 Clr Pet Scan 12/13/10 Clr Ultra sound/biopsy 5/4/11 MRI Clear 8/2/11 All Clear 5/25/12 All Clear 6/3/2016 All Clear
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Even though I was "eating" appx 3000 cals per day I didn't gain a pound for at least my first year post Tx.
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.
| | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jan 2010 Posts: 142 |
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer 1/18/10 Clr PET 1/27/10 Surgery found Perineural invasion 3/22/10 Began Rad 05/05/10 34 rads 8/19/10 Clr Pet Scan 12/13/10 Clr Ultra sound/biopsy 5/4/11 MRI Clear 8/2/11 All Clear 5/25/12 All Clear 6/3/2016 All Clear
| | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 126 | I just find eating takes too much effort, it takes all the enjoyment out of eating. I always think twice before I put something in my mouth. My biggest enjoyment is my once a day milk shake. This is one thing that still taste good, is easy to eat and actually feels good.
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Seda Bug, it's totally normal! I didn't have an appetite for months and would force myself to eat/try something. Now I can taste better but food still isn't the same, it smells great but just doesn't hit the spot! I think/hope with time it will improve.
I too lost weight, over 65lbs, and no matter how many calories I force, I can't gain weight. I hear it takes time so I'm okay with it but it's also keeping me from getting my G tube removed since drs fear me going down to double digits, they are making me down more formula to increase the calories.
Hang in there, it will get better!
Last edited by ESikon; 06-21-2010 08:26 PM.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Seda, I lost 70lbs total after tx/surgery (35lbs after each) and literally couldn't gain it back for over a year afterwards. I was 140lbs last year this time when my Dr's tested my testosterone levels and found I was horrifically low (normal range is about 250-800 in males and I was at a 70). I was put on Androderm and started to gain some weight back...but still about 35lbs off my old muscular physique Eating to me is still quite a chore and I have to be "motivated" to eat solids...mostly my diet consists of Ensure Plus...and of course the occasional pizza! Needless to say, even though I own a restaurant, eating isn't what it used to be for me. It has gotten better with time but really it's the "new norm".
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Seda, shall I assume part of the problem isn't related to Acid Reflux or other stomach malady? It seems to be a common enough side effect and one I received as a going away gift from RT a year ago. I'd lost 30 pounds during treatment, initially gained about 7 of it back and that's all she wrote. One of these days, like DavidCPA, I'll likely begin to gain some more. I do eat solid food but I must say my appetite is minimal and I like you I don't enjoy it very much, especially as my neck dissection mucked around with the nerves to my tongue so I don't taste very intensely. So enjoy your tasting at least, and I'm sure your appetite will return in good time. (but consider the Reflux thing too or at least ask one of your docs about it)
So hang in there!
D2
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Seda,
I just have to assume that my body, both mentally and physically was consuming a lot of energy in my recovery process so the extra calories were needed to fuel that.
Pre Tx I exercised a lot, never ate 3000 cals a day and always tried to avoid ate fatty stuff and I still could gain weight just by looking at a juicy hamburger. I was by no means overweight but it was still a struggle to keep myself that way. First and second year post Tx I didn't exercise as much, ate all the wrong fatty foods, consumed 3000 cals a day and still struggled to gain weight. Not a doctor but something else was going on. Perhaps my thyroid crapping out and subsequent attempts to properly adjust it?
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.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Healing is what takes so many calories. My doc told me that in order to heal properly I must have a high protein diet with lots of calories. The healing process burns calories like crazy.
Ive lost 70 pounds since 2007 and struggle to get enough calories in daily to avoid losing more weight. For me its been a huge battle to maintain my weight. I use 3 different types of formula in my peg tube every night. Its making my diet balanced and gives me over 1000 calories per day, I eat about another 1000 and I still have trouble keeping my weight steady. Guess its time for me to have another hot fudge and caramel sundae!
Best of luck to you in your recovery. ChristineSCC 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 very happy to be alive | | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jan 2010 Posts: 142 | Thanks for all the input I suppose I will just watch it for the next month or two and see how it goes. David B I am on meds for reflux. I had chest pains the end of last year and that put me in the hospital for 3 days. They did every heart test possible and concluded it was reflux. I had such bad chest pains I almost passed out at the Vet's office and I was rushed to the hospital by ambulance. I actually saw him within the last couple of weeks and I got an ok from him, just stay on the meds.
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer 1/18/10 Clr PET 1/27/10 Surgery found Perineural invasion 3/22/10 Began Rad 05/05/10 34 rads 8/19/10 Clr Pet Scan 12/13/10 Clr Ultra sound/biopsy 5/4/11 MRI Clear 8/2/11 All Clear 5/25/12 All Clear 6/3/2016 All Clear
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