| Joined: Jan 2013 Posts: 80 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2013 Posts: 80 | While I have finally gotten off the PEG and am able to eat many foods, I find I have no appetite at all and find I have to mentally prepare myself before each meal. I know it's a combination of so many things and will hopefully pass over time. However for now I could easily skip meals and not feel hunger.
I will be talking to my doctors on this, but wonder if anyone has tried any meds to stimulate appetite? I haven't researched them yet but wonder if they are helpful?
Thanks in advance, Nancy
Nancy Age 56 at diagnosis Neck Lymph node removed 11/2012 Tonsillectomy perfomed 12/2012 - identified as primary SCC Left Tonsil with Left Node involvement, DX 12/2012 RX started 1/29/2013, finished 3/23/2013; Daily IMRT (35 Sessions) Weekly Taxol/Carboplatin (6 weeks) PEG placed after week 4 (3/1/2013) PEG removed 6 1/2 months later (8/12/2013) | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Nancy, so happy to hear that you are off the peg tube. That's a major step forward. When I went to the post-treatment workshops on John's behalf, someone suggested watching the Food Network/channels on TV as a way to stimulate the appetite. If it works, it would be the simplest and cheapest way to deal with it.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | There are prescription medications, foods, and other things to help increase the appetite, and some even taste.
Megace, Marinol Caffeine, wine Fat, oil, sugar, fat and sugar combined even more so, and reason their in snacks Appearance of food, color of plate, utensils, room ambiance The senses, sight, smell, hearing, tasting, memory Watch the food channel, read cooking magazines, books. Eat foods familiar not unfamiliar
I hope this helps
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | If Eric were here I KNOW he would suggest medical marijane... if its legal in your neck of the woods, not smoked vaporized... gives you the munchies. Now I don't do drugs - never have, but others swear by this. I was blessed in that I was able to force myself to eat despite the grossness of it all - not everyone can do that. anyway give it a go if you want.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | [quote=Cheryld]If Eric were here I KNOW he would suggest medical marijane... if its legal in your neck of the woods, not smoked vaporized... gives you the munchies. [/quote]
"MMmmmm... donuts" Homer Simpson ;)~
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | Great news on getting of the PEG.
Appetite and taste are slooooooooooooow to return. Evern at 10 months outs, I am never really hungry. However I do find myself in the kitchen nibbling and whatever is around. I have found that once I start eating, I can eat until I feel full. At least that part works. I finally started to gain a little weight after 9 months.
I would advise not messing with more drugs at this point. In the long run I think they will just delay what you want to happen which is normal hunger-feeding-full cycle.
While at home I kept small portions of easy food around, like yogurt, cereal, nuts, granola bars, fruit cocktail, cottage cheese, ect. I just kind of grazed all day long. Please don't wait until your hungery to eat.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | 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 | Nancy, congrats on coming along to be able to get rid of the tube. Its a huge accomplishment along your road to a full recovery. Best wishes with your continued improvements with eating. 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: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Hey Nancy, congratulations on your tube-free tummy!
I have no experience in your particular situation, but just want to mention that exercise could help because it stimulates your stomach and bowels to process/empty efficiently.
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Nov 2013 Posts: 3 Member | Member Joined: Nov 2013 Posts: 3 | Hi Nancy, I just went on megestrol Acetate. generic for megace which is a medication used for Anorexia. It's awesome, I lost 65lbs since I was diagnosed down to 130lbs. This really works. Hungry all the time. It was this or Maronal, and since I have kids I really try not to use marijuana products. I gained 15lbs the 1st month and 5 lbs last week. If anyone said I was going to gain 20 in 5 weeks I would have paid anything. Since having teeth removed from radiation poisoning I just stopped eating. Depression, hate my peg tube, it falls out in Vegas elevator (very funny). This has been a life saver. I'm eating everything I can get down and loving it. No pumpkin pie is safe anymore. Good luck and happy eating. | | |
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