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Joined: May 2002
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Hi Guys,
Zinc is supposed to help you get your taste back to normal. I was put on 220mg Zinc sulfate 10 years ago after I had radiation. I got my most of my taste back after a couple of months. Ask your doctor or dietician. I also wouldn't wait any 6 months or for that matter six weeks before trying something again that you used to like. Eat foods with lots of moisture or plenty of sauce and drink lots of fluids to help wash it down. Since it will take much longer to eat, read a magazine while you chew and who cares if everyone else is finished with dessert while you are on the main course. Let them do the dishes. Buffets are great if eating out because you can sample many different foods and eat what works. Soups, hot cereals, eggs, even some salad worked for me for lunch and breakfast.

Have a Merry Christmas,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Lisa

Although you avoid processed food, maybe you should consider them as medicine. There are many products out which are very good and are basdically plant based.

I had problems with soy/tofu products giving me terrible stomach cramps. Since I knew that I would be on a liquid diet after surgery I tried various products before I went in. I found that in addition to rice milk I could tolerate Vitasoy and it tasted good. Somehow since surgery, I can now enjoy tofu/ soy products. Maybe I had something which the weeks of antibiotics killed.

Most of the supplements are dairy and because I keep a level of Kosher which requires that all dairy products are supervised beginning with the milking of the cows I spoke with the dietician and found a non-dairy supplement. (look for the word Parve - it means do dairy or meat products.)

Try to increase sweets. There are "ice creams" which are non-dairy. Rice Dream and Tofuti have been around awhile and there are two new brands Good Karma and Decadent Delight which are gluten free and delicious(expensive, but delicious).

good luck
Malka


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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By avoiding processed food, I kind of meant Doritos!

My main concern isn't HOW to get calories in - it is WANTING to get calories in! I do try a variety of foods - that isn't my problem...the only reason I mentioned that I don't eat processed foods was in response to the supplement suggestion - I cringe every time I even think about trying to drink any of those things after throwing them up for months...plus other than the calories, they are not very good for you at all. High fructose corn syrup is one of the main ingredients and I banished that from my life years ago. During treatment I tried the supplements because I had no choice - but found that I couldn't physically tolerate them. I would literally pour them into the peg tube and throw them right back up.

The reason I posted was because I was wondering if other people lose any interest in food post feeding tube. My suspicion is that my stomach shrank quite a bit from months of not eating. It isn't a taste thing - I taste food just fine and other than hating meat now, I am pretty much back to normal on that front.

Lisa


Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
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Lisa,

Are you sure it's not anxiety/depression re the possible return of your illness that could be causing your lack of interest in food? Just askin'.

darcy (Matt's Mom)

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Sure - anxiety could be playing a role too - that's why I'm wondering if other people have experienced the same thing. I'm trying to figure out if this is physiological or psychological. I imagine that at the very least my inability to eat very much at a sitting before feeling very full is physiological. I'm also wondering why I wouldn't feel hunger at all any more - I do feel an energy crash when my body finally says "enough - feed me" - but not the feeling of hunger. I think so far David has said it best - eating is now a chore, so perhaps my brain is now saying "why bother?"

The real irony is that I love cooking, read and collect cookbooks and Food Network is my favorite channel! Even when I was at my sickest I watched Food Network through my Fentanyl haze.
Lisa


Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
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Lisa,

We all go thru a long period where we are questioning everything in our life that led us down this path. All things changed for me once Tx was over and I was back to trying to reclaim my life. I first wanted to retire, sell everything, downsize our home and live out our lives. Fortunately my wife said NO give it one more year and see how you feel. I HATED eating because nothing tasted the same except sweets and I was never a sweets eater..always into exercise...so sweets were kinda like against my "religion". In order to enjoy eating I had to find a way to add sweets to my meals like pancakes with syrup and eggs for lunch and deserts with dinner. I had to force myself to eat. My wife owns a restaurant which is located next to my CPA office. All day long she and other employees would ask me what do you want to eat?? They would come over and bring me food and say try this. All I wanted was for them to leave me and my pity alone. I would say you just don't understand.

You will constantly go thru changes during your recovery and most are very subtle. I found my saliva getting better and my taste improving slowly and with that came more foods I could add to my "what do you want to eat" list.

Once I started exercising again I felt like I had reclaimed a big part of my life back and my attitude really changed. This site also helped by showing me that I was just recovering normally and others improve over a long period of time.

I am now glad my wife put her foot down to retirement and I now eat what I want and I don't hate eating anymore. I still like sweets more now and this holiday stuff isn't helping. You should see my office...it looks like a cookie shop not a CPA's office !! Clients and employees all gave me cookies and chocolate knowing my newfound attraction to sweets. Somehow I'll find the strenght to eat my way back to my CPA office before tax season starts. LOL

Hang in there and believe me things will get better. I guarantee 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.
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David - that is such great news! Thank you so much - THAT was what I was looking for in a response! I don't particularly feel bothered by my lack of interest in eating - it is everyone around me. They end up making me so self conscious when I just wish things would be back to normal.

I also am adamant about not eating "bad" stuff - especially not sugar - I also view it as "against my religion." I have added some local honey into my diet for extra calories, but that is as close to eating sweets as I get. I also feel great now that I can exercise again - I missed hiking, getting out in a canoe, walking - I'm thrilled that I can do those things again. But then, with everyone around me worrying about my weight and how little I eat, I start wondering if I should cut back on my exercise so that I don't expend too many calories. Then again - I feel really good and other than the worry and anxiety that seems to always be there in some amount (which I see from this group is perfectly normal) I feel like I'm back to "normal" (whatever that is!).

Lisa


Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
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David, the sweet things don't make your tongue hurt? Anything sweet I try to eat makes my tongue feel like there is a fire on and around it.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Lisa,
I wrote a long post, then my net connection went down!
Summary---am skinny anyway and never had much appetite.
Lost 10LBs when jaw tumour stopped me eating--snacks to me are fruit and yoghurt!
During chemo, made notes/charts
Wholemeal toast + butter+ honey---or with full-fat cheese
Healthy cereal + whole-fat milk
Choccy bars whilst walking or after swimming
Cold meats/tinned tuna/tinned sardines etc(they're fortified), with plain boiled spuds plus butter plus chopped salads with full-fat dressings.
Chicken with creamed potatoes with whole-fat milk and butter.
Fresh soft fruits with double-cream
Fried mozarrella triangles!!!!!
Little boxes of nuts and raisins
Soups with butter-laden bread
All kinds of other stuff I typed and lost in original post, but found that making daily notes and weekly charts ensured I kinda 'made it a project to eat'--and gained 9Lbs in the process, felt healthy and blood counts stayed good!!
Had probs since, just started 'charting' again--it works!!
Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
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I had my appointment with the head/neck surgeon yesterday - he was concerned about the weight loss (I had lost an additional 2 pounds since my appointment with the radiation oncologist the week before). He is checking out my thyroid function and my nutritional status (had my blood drawn for those things today) and said that if I lose any more weight or if my nutritional status shows up negatively, then they have an appetite stimulant he will order.

Thanks everyone for so many great suggestions!
Lisa


Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
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