| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Did any of you experience loss of appetite? I know this just the beginning and I have to froce myself to eat while i can, but I do not want to eat and foods taste nasty. I have been craving fruit, but the moment I put it in my mouth it makes me sick cause it don't taste good. I have 7 days down. Whoo hooo!
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Angelia, I'm 6 months out from RT and I still have no real appetite. Like you, nothing tastes particularly good or appetizing. Tough as it is, we need to force ourselves to eat. Although thank god for Ensure and its cousins!
Courage. 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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Angelia,
I went through the same thing you are. Looks like our appetite goes with the taste buds. We just make ourselves eat.
I,m doing better then David as my taste is about 3/4 back and I,m only about 6 weeks post Rt.
I went out tonight and had a shrimp dinner. I had to push myself a bit at the end as it was not quite as good as I remember, but it was nice to go out with the family and order something normal.
Kelly
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Jun 2009 Posts: 138 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | I only have 5 days radiation and one big dose of chemo down and I don't even like the thought of food. I've never been a good eater but would eat when someone put food in front of me. Now it's getting to where they're gonna have to hold a gun to me to make me eat - I just don't want to. And my throat isn't even sore yet. It's all in my stomach blah and my mind I guess.
BOT-SCC Partial glossectomy 7/16/09. Stage IV, Rt ND 10/2/09. Teeth out 11/5/09. Port/peg in, 11/20/09. 7 wks rad & chemo, end 1/22/10 lung, colon biopsies 1/9/11 - both cancer colon resect surg 1/10/11 Folfox + Avastin - discontinued 6/11 lung surgery 3/13/12, 5/1/12 mets to liver and bones passed away 9/4/13
| | | | 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 | Angelia,
Lost of taste and corresponding appetite affects just about all of us that have the radiation. That's why we tell people to eat eat eat before Tx starts to maybe put some extra cushion on before the Tx starts to affect us. That said though, you MUST and I MUST emphasize MUST, continue to force calories (and water) into your stomach so you can help your body fight the effects of the Tx and avoid some unnecessary additional side effects.
I sought the drink with the most calories in the smallest container to reduce the time it took me to achieve my daily caloric goal and that is Carnation Instant Breakfast VHC that has a whopping 560 calories in a=the small 8 oz can so instead of having to drink 6 or 7 cans of Ensure I only had to drink 4 cans of VHC. Makes a huge difference when you don't want to drink anything .
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 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Hi All:
Help! I was wondering if any of you know of a drink supplement that doesn't contain soy. I have been going to numerous ENT and gastro doctors to find out the reason for my putrid sweet mucus bubbling up in my throat in the a.m., and all that see I had radiation/chemo 2 years ago for tonsil cancer, assume that is the reason. Recently, I did find a gastro dr. who did a HIDA test and found out my gall bladder is only functioning at 8%, instead of the 35+ norm, so tomorrow I have my gall bladder removed (wish me luck). I also had a mucus culture-like test that showed a mouth yeast infection, and a soy allergy. Guess we can have other "normal" things wrong with us besides cancer, or cancer-related effects. Anyway, I've been drinking the Carnation Instant Breakfast VHC with Boost every day at lunchtime because I still have trouble swallowing. I noticed today that both contain soy. Do any of you have any experience with such, or know of another substitute I can drink to maintain my weight. Thank you.
Julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Angelia What is an "appetite", I have forgotten that term.  charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | JulieAnn
Unforunately, Jevity has "soy protein isolate", so I am at a loss on what you can do. If you can tolerate VITAMIX texture, perhaps you could make your own nutrition drink. I am planning on doing that soon myself as I am getting very tired of pushing cornmaltodextin and corn sryup solids (Jevity) down my PEG. It cannot be healthy for me. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Julieann,
When I first started my treatments, I was making my own protein shakes using whey isolate protein powder, instead of soy protein. I bought it at Whole Foods, an unflavored variety that blended well.
Unfortunately, soy is added to all sorts of foods now so you'll have to be careful.
- 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
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | You always have a way of making me smile you old frack.  I love this site. I now have sores popping up in my mouth too. YEAH!! Got to love it, wait, no I don't. I HATE IT!
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
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