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#58160 04-19-2006 07:48 AM
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rwarm Offline OP
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Leon is now about 8 weeks post treatment. He is worried because he has no appetite. He is eating, because he knows he has to, but really doesn't have much taste happening yet. I spoke to the doctor about this and he sort of just brushed it off. I guess as long as Leon isn't losing weight he feels he is doing ok. But he is not doing ok if he has to force himself to eat. Is this normal? Can it be because he doesn't have much of the taste back yet?


Rhonda - Caregiver to husband Leon. Diagnosed with SCC of right tonsil, 1 lymph node. Right tonsilectomy 10/3/05 - Right neck dissectomy 10/12/05, completed 39 IMRT treatments 2/23/06.
#58161 04-19-2006 09:42 AM
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Hi Rhonda,

It will take a while for taste to come back. I found sweets esp. good at first. They really felt good on my tongue. Sugar or honey on my oatmeal made everything go easier.

Steve Daib


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
#58162 04-19-2006 10:59 AM
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Hello Rhonda, his sense of taste and appetite may take a while to return to normal. It is the radiation that causes this. Every person reacts differently and he need not worry. In the mean time, he can concentrate on things he can taste to help with eating. For example, eggs always tasted ok to me so I ate a lot of eggs. I helps that they can be prepared in a variety of ways. Also, non-hot spices can be really helpful to jazz up a dish that he can't taste well yet. Do some experimenting with tastes.

Just so you know how different we all respond, unlike Steve, I couldn't stand sweet things. The slightest sweetness was too much for me.

take care


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#58163 04-19-2006 11:24 AM
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Is he still taking any kind of prescription painkillers? I didn't really have any appetite until I was off of those......


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#58164 04-19-2006 03:02 PM
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Rhonda, how much [if any] weight has he lost since this started and what were his eating habits before? My husband,before cancer,liked to eat one big meal at night and nothing the rest of te day. When his stomach shrank after surgery, rad. tx, etc. he was never hungry and had to force himself to get nourishment. If Leon can't taste food, then it just becomes "something you have to do". One thing that might help is to cook something that makes the kitchen smell good [that he used to like and might be able to get down] Smell stimulates your brain. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#58165 04-19-2006 03:02 PM
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Vin Offline
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Rhonda,

Like others have said, the taste may take a while to come back. For us after 8 months following the end of chemoradiation the test buds have not come back yet. Spicy foods are just impossible at this stage. Plus radiation damaged the esophagus and thus not able to eat by mouth for eight months and had to use a stomach feeding tube. Needed 2 dilations of the esophagus to just nibble on food.


CG to wife;
Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005.
Dec 2006 tongue surgery, Scar tissue no cancer.
Feb 2010 neck node FNA - negative.
2010 ORN right jaw plus fracture
2015 ORN left jaw plus fracture
Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube
June 2016 Difficulty breathing - Permanent Trachea tube
Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020.
15-20 esophagus/larynx dilations

#58166 04-19-2006 03:40 PM
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Hello Rhonda,
Leon seems to be close to what I went through or at least similar, I had the same right tonsil removed 10/7/05, 33 IMRT and three chemo treatments 11/01/05-12/16/05, modified neck dissection 01/11/06 had Peg removed first week of feb. Rhonda I lost about 35-40 lbs but have since gained about 25 back, I have about 80% of my taste back and about 50% saliva, it is gonna happen for Leon also , could be any time now, he has to keep trying things. I relied on yogurt for the longest time also some pudding. The last taste to return to me was salt. If you were to diagram the taste buds on your tongue the tip is sweet, the sides are for salt and the back for sour and bitter, those are the main taste components of taste buds. Since he had IMRT for tonsil it would effect mostly the side of the tongue(salt). Since salt is in the majority of the food that we consume here in the west (at least cooked foods)it makes sense that he cannot taste much , maybe try some sweet things. It is gonna come back for him . Leon Hang in there my friend it will get better and those taste will get better and you will savor them. I too was that one meal a day person, not any longer, three a day with breakfast as a big kicker, poultry susage, scrambled eggs, a garlic bagel, milk and OJ it will be happening soon my friend .
lenny

#58167 04-20-2006 02:31 AM
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rwarm Offline OP
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Thanks everyone for your replys. Leon was always a big eater. All day long he ate. But, he works a very physical job and would wear it off and stay in good shape, (he's a steel worker) so this no appetite thing is really worrying him. He lost about 20 lbs. during treatment, did not have a peg, and was not on much pain medication - no pain medication at all now. Other than this taste-appetite thing and extreme fatigue and extreme dry mouth, he came through things fairly well. I will show him these e-mails and maybe it will ease his mind about not having an appetite. Thanks again and take care everyone!

Rhonda


Rhonda - Caregiver to husband Leon. Diagnosed with SCC of right tonsil, 1 lymph node. Right tonsilectomy 10/3/05 - Right neck dissectomy 10/12/05, completed 39 IMRT treatments 2/23/06.
#58168 04-20-2006 04:01 AM
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Hi Rwarm,

Well, I am some what the same. I had no appetite. Now at three months after treatment I am just starting to want to eat. I like others started with one meal a day. I am now doing 2 small meals a day and 1 Peg tube feeding.

Hope all goes well.
DM


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015

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