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#38644 06-03-2005 03:02 PM
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The night before John's 1st meeting with the Rad folks, we went to an Italian restaurant and he ordered Manicotti and ate the whole hugh serving.A couple of days ago, I called the chef of the resturant to see if he would share the recipe with me. He kindly did and I cooked it tonite {today was John's 7th rad]. John said it was inedible- I thought it was pretty good and I'm a good cook. So, my guess is that the rad. reactions are starting. I have read lots of food reactions after rad. on OCF over the last few months, but I don't think I can find them all again. PLEASE anyone who has had or is having radiation now- would you post foods that that taste awful to you now. I'd like to see if there is a general pattern and if there is,I am going to avoid cooking those foods for John. Since nourishment and calories are the most important, and he hates the feeding tube suppliments, I don't want to fix things he can't eat. Thank you, 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

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#38645 06-03-2005 05:59 PM
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Amy, I am three years out from that time, but I remember just not bothering with real food when everything started to taste "wrong" and then a little later like cardboard. Generally, salty things tasted okay the longest. I ate quite a bit of smoked salmon the week before I lost all taste. Tell your husband that PEG is going to be his new girlfriend for a while, and having her to get drugs and food and water into him when his mouth is too sore is honestly a lifesaver. As far as the canned food for the tube, going directly into the stomach means there is no taste to dislike, so that shouldn't be a problem. My best wishes to both of you. Please, while you are dealing with the now, do not forget the long view, and know that this is a very small piece out of what will, with good treatment and luck, be a very long life.

#38646 06-03-2005 06:41 PM
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I wish I could help but to be honest Harry hasn't eaten since Feb.1st. I keep trying to encourage him but he doesn't like the taste and just flat out refuses. He just pours his food down the tube and seems content with that.

I keep trying to tell him that he should at least try and on the rare occasions he has eaten some cream soup or something but it is very rare.

If it weren't for the PEG, Harry wouldn't be alive. I am anxious to read the responses you get because I am trying everything to get him to eat. He has no pain in his throat he just gags when he tries to eat something solid or it tastes really bad so he just doesn't bother trying.

Interestingly he won't even drink a shake or anything like that.

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
#38647 06-04-2005 01:44 AM
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Amy,

For at least the latter half of my radiation treatments and for many weeks after that, NOTHING tasted good to me, and it took months for "normal" taste buds to come back. I figured out early on that I couldn't make my eating decisions based on taste, but had to make myself eat foods that were nutritious and soft enough to go down my throat easily. Mealtime was simply a task to get through to reach a daily calorie goal in order to survive. I used variations on the high-calorie shakes that are posted here on the site, as well as yogurt, ice cream, creamy cereals, lots of baby food, soups, and a variety of blender concoctions that I experimented with using fruits and vegetables. I should point out that none of these tasted good at the time -- they were just the simplest way to get what I needed.

The most important thing is maintaining a good calorie intake (whether by PEG tube or by eating things that are very easy to ingest). Taste buds are a temporary casualty of radiation, but they do come back with time.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#38648 06-04-2005 07:04 AM
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Cindy, I've been thinking about Harry. Do you have a Hooter's Resturant in your area? Perhaps you could get one of their bombshell bartenders to come serve Harry a shake on a small silver tray and entice him to drink it. [I'm not being irreverent, but it has occurred to me that our mates get tired of hearing us beg and cajole them to eat. A little entertainment might help an attitude]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

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#38649 06-04-2005 11:45 AM
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Amy,
Like Cathy, my experience was that just about everything tasted lousy. Those things I could taste didn't taste right (vanilla ice cream tasted like a stick of butter).
The things I had to avoid included , of course, anything spicy, but you might be surprised at the foods which became spicy. I couldnt go near spaghetti sauce or marinara. Ketchup is still bothersome. Anything with acid such as vinegar in it would burn terribly. I had to get creative with gravies and sauces.
I did it without a PEG tube, so despite the flavor or lack of flavor, I had to get about 2000 or more calories and 2 liters of fluids down each day. Toward that end, I put a whiteboard on the refrigerator, and logged in all of my fluids and calories each day. This proved to be a pretty good motivational tool ( and it kept my wife on my case to keep hydrated and fed).By the end of RAD Tx I couldn't choke down all that fluid every day, and was getting at least one liter thru my port. My insurance covered periodic visits from a home healthcare nurse to hook up the port, and I hooked up the IV bag every day.

The bottom line though is that it's absolutely critical to his recovery that he get those calories and fluid every day. Calories that the body uses to rebuild from the damage caused by the radiation.
I have no better recipes than those that have been posted here before. Sorry.
My best wishes for a speedy recovery.

Good Health,

Chuck


SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
#38650 06-06-2005 03:20 AM
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Amy,

I lived on Ensure, Scrambled Eggs, Oatmeal, and Matzo Ball Soup. That wsas really all I could still taste once the rad took hold around week 6.

Christine would also make these Bacon, Egg And Cheese Croissant Breakfast Pizza's from Schwans. Loved em.

Good Luck.
-rh


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
#38651 06-06-2005 08:50 AM
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Amy, this is a tough thing for you to try and guess at. First the various changes in taste are different for everybody. Second, there is a general loss of appetite that nothing will overcome (the result of the radiation). Like Chuck there are several foods that will cause burning heat. Tomato based foods commonly cause trouble, as do all foods with vinegar. Many salad dressings will be a problem.

For me what didn't change was the taste of meat (all kinds), eggs, butter, cheese, most vegitables, soups and stews. Of course everything can be put into a blender to make it easier to swallow. I know that the regulars here will remember my Whopper-in-a-blender story, but you havn't heard it yet. Yes I put a whole Whopper with cheese into the blender with some milk. It didn't look all that good but it did taste about right and I needed something to remind me of a taste before treatments.

My suggestion is to have him tell you what interests him by way of taste. Try flavor spices to bring up the taste volume some without heat.


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.
#38652 06-07-2005 04:49 AM
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Amy,

My recommendation is to try something cold. Everyday after radiation I would go upstairs and get a fruit smoothie and the cold helped my throat right after the treatment. When I lost my taste I lost my interest in orally eating. That's when I started on the peg. It was so much easier than having to think what can I get down today! But before the peg I did alot of shakes and LOVED Culvers vanilla custard. It was easier going down than ice cream. After treatment it was about 8-12 weeks before I wanted to eat anything again. I too found anything tomatoe based would burn, stick to alfredo sauces. And gravy with everything! Mashed potatoes did not taste good and felt awful - it was the texture. First taste to return was chocolate so that was a good thing.
Try some green tea, oat meal, carnation instant breakfast -vanilla - the chocolate burned, cottage cheese with peaches or plain (lived on that for awhile) Avoid red jello. I remember that burning like crazy. A friend recommended drinking aloe vera juice and I couldn't find it at the time. Saw it at Wild Oats three months ago (a year to late) Try it I hear it is very soothing.

Basically it's trial and error and alot of advice.

And lastly just make sure to keep drinking or at least sipping water. Important to keep the throat moist!! Also try to have a humidifier in the bedroom at night it helps with the dry throat. Which can and probably will be a pain when trying to sleep.

Good luck to you!! The taste does return. In Feb. of this year my mom made a cake that I use to love and I couldn't taste it, it was like cardboard. Just this past Sunday she made it again and this time it tasted just like I remember. My last treatment was a year ago. Things are still improving. It was hard not to feel sorry for myself at times but I know I can see the differnce now and it makes me feel sooo much better that things are getting back to "normal". Whatever normal is.

Take care.

#38653 06-08-2005 04:34 AM
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Amy-
Cold frappaccinos keep me going. And melon smoothies. Melons, pears and mangos were the only fruits that didn't burn. The most important thing that I really didn't take as seriously as I should have was to continue to stretch open your mouth and pretend you are eating a hamburger! It was really frustrating when the mouth sores finally healed and I was ready to eat to discover I could no longer open my mouth far enough to get a sandwich in. Have John excercise that mouth! - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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