Any Food ideas ?

DominicM
DominicM Member Posts: 18
edited March 2014 in Head and Neck Cancer #1
Am 4 weeks into treatment for SCC, BOT, HPV+, 3 treatments of Cisplatin 3 weeks apart with 35 IMRT treatments.
Right now I have no problem eating/swallowing but pretty much everything tastes absolutley horrible!!
Would greatly appreciate any ideas/help on any food(s) that are at least somewhat palettable. So far have only lost 2 lbs but loss of appetite is becoming a problem due to how everything tatstes.
Thanx, Dom
p.s. I know everyone is different but also wondering how long for most others taste to return.
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Comments

  • Pam M
    Pam M Member Posts: 2,196
    Cardboard Cafe?
    Dom,
    Unfortunately, I don't recall hearing of any one food that was a consistent "winner" for folks losing their sense of taste. I moved from average foods to trying to find foods with strong or concentrated tastes that were not spicy or acidic (mouth sores). At one point, I was amazed to discover that I could not taste spaghetti sauce, but could taste steamed chicken from a local Chinese place - no clue how that was. I also found myself eating foods that I shouldn't rely heavily on (ready to eat pudding comes to mind - Dulce de Leche and a Cinnamon Roll flavors were two I could taste after I "lost" many other tastes). Like most here, I was on a quest to find food I could taste, and wasted a lot of food along the way. For most foods, it seemed the "bad" foods had more taste for me than whole foods.

    something I didn't try that I wonder about is artificial flavoring - maybe adding lots of vanilla extract (or banana, orange, etc) to oatmeal, or whatever. Of course, I guess you'd want to make sure it's alcohol-free.

    At one point, it just became a matter of relying on smoothies and nutrition drinks, because I could get it down, and could get it down not only with less pain, but quickly (chugging a cup of tasteless goo was better than eating a plate of tasteless stuff).

    Good luck - let us know if you find foods that work.
  • Pam M
    Pam M Member Posts: 2,196
    This, Too, Shall Pass
    Dom,
    On the plus side, I regained my taste pretty quickly. when I was able to eat and swallow (had to rely on my PEG for a while), I was able to taste. I could even taste sweet and chocolate. Taste did return in stages - was weak at first, except chocolate - it was like concentrated chocolate at first. Later, I realized it was only certain types of chocolate - other chocolates I couldn't taste. I do still find that the sweet taste for some things fades out after a couple bites.
  • kingcole42005
    kingcole42005 Member Posts: 178
    Hi Dominic,
    My situation is a bit different than yours. My cancer was under my tongue and I only had 30 rads, IMRT. I didn't lose all of my taste my biggest problem was pain. Some things did taste pretty horrible. I did find the kirkland brand slimfast palatable. I am still drinking at least one a day as I can't eat due to pain. They go down pretty quickly too so the taste isn't too horrible and they aren't low calorie at all. Good luck to you. Shelly
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Pam M said:

    This, Too, Shall Pass
    Dom,
    On the plus side, I regained my taste pretty quickly. when I was able to eat and swallow (had to rely on my PEG for a while), I was able to taste. I could even taste sweet and chocolate. Taste did return in stages - was weak at first, except chocolate - it was like concentrated chocolate at first. Later, I realized it was only certain types of chocolate - other chocolates I couldn't taste. I do still find that the sweet taste for some things fades out after a couple bites.

    Hmm. That is so tough
    Hmm. That is so tough because everyone has such varied tastes. I didn't have chemo, only rads. I quickly became unable to eat and swallow anything. But for the very begining few days when I quickly lost my taste I was eating like a maniac because I couldn't taste anything. I just never felt sated. I would try bold tasting foods. Maybe like brussels sprouts, they can be cooked soft with butter for easy swallowing if necessary. Fried rice with a bit of sesame oil? (smells good bold taste. Good for you). Try fragrant things too if you can't taste sometimes that helps. Use fresh and fragrant herbs like Basil, Rosemary, Thyme and sage. Garlic if you can handle that might be tasty. Lamb chops? I remember I could taste them a little bit. Believe it or not I was able to tolerate McCormick brand curry powder a short time after rads. It's not as hot as some brands can be. Even just the smell of it makes me hungry. I would fake my brain out a little when I could only use my peg tube and the smell of that crap (nutren 1.5) was making me sick. Like no kidding physically ill. So I would open up almond extract right under my nose or curry powder or something like cinnamon, something that I loved the smell of to make me hungry and drown out that awful canned crap smell. :) I can tell you I don't miss that. I was on my peg tube for 18 months.


    Best wishes

    Sweet
  • DominicM
    DominicM Member Posts: 18
    Food Ideas
    Thanx for the feedback thus far.....I too have probably wasted a lot of food just by experimenting....it's down to a matter of just avoiding the really absolutely horrible tasting stuff right now...cardboard diet certainly fits very well...one thing I did'nt mention was that my sense of smell also seems to have mostly gone as well, so it's difficult to even fool myself that the food actually smells good. I've had family bring over meals that I know are absolutley wonderful, but just hav'nt been able to palette most of it (of course the main idea behind the prepared meals is that it's less cooking for wife and kids). For christmas I've been well stocked with boost and ensure, so worst case scenario I can always do a quick chug to get my nutrition. Been keeping a positive attitude and I know I have to keep eating to avoid the PEG but there's nothing wrong with a little hope that there might be some kind of food out there than can break through this awfulness...good news to hear that taste can possibly return quickly...certainly that's something worth looking forward to !
  • DrMary
    DrMary Member Posts: 531 Member
    DominicM said:

    Food Ideas
    Thanx for the feedback thus far.....I too have probably wasted a lot of food just by experimenting....it's down to a matter of just avoiding the really absolutely horrible tasting stuff right now...cardboard diet certainly fits very well...one thing I did'nt mention was that my sense of smell also seems to have mostly gone as well, so it's difficult to even fool myself that the food actually smells good. I've had family bring over meals that I know are absolutley wonderful, but just hav'nt been able to palette most of it (of course the main idea behind the prepared meals is that it's less cooking for wife and kids). For christmas I've been well stocked with boost and ensure, so worst case scenario I can always do a quick chug to get my nutrition. Been keeping a positive attitude and I know I have to keep eating to avoid the PEG but there's nothing wrong with a little hope that there might be some kind of food out there than can break through this awfulness...good news to hear that taste can possibly return quickly...certainly that's something worth looking forward to !

    From the Caregiver Side
    It got pretty frustrating to have Doug not able to eat food I made - not because it was too hard to swallow but because it tasted bad. I felt like an old-time mother telling kids they had to eat stuff that tasted horrible because it was good for them. However, the mess that radiation makes of your taste buds is orders of magnitude worse than what spinach tastes like to an unwilling kid.

    You have to let go of the waste idea - this was tough for both of us. It does help to have folks bring food for the rest of the family (this is what I asked for from my friends as well) and then you can pick a bit and supplement with stores of foods you can stand, as well as the Ensure things.

    Doug could still taste sweet things, so I ran with that. Carrot soup worked pretty well for a while (boil or roast carrots, puree with a bit of milk, add powdered milk for extra protein, add cream for texture and calories, then play with spices in small batches). So did our favorite mashed potatoes mixed 2:1 with mashed squash. Probably tasted like sweetened cardboard, but he could get it down. Meat got smothered in carrot gravy (make white sauce using carrot juice as the liquid and then color with the bottled gravy browner and salt to taste).

    Salty things went down OK as well. We've been eating a cardiologist's nightmare for breakfast: 2 eggs scrambled with 1 T cream and topped with a slice of American cheese (you can stir that in while cooking or let it melt on top). Neither of us ever had a problem with cholesterol - we use Eggland's best or local organic/free range, as available. Ham tasted pretty good to him so I used that for flavor a lot (various bean soups with ham were OK - leafy greens, like kale or romaine are good shredded up and added to that).

    Consider picking up some Boost pudding. You have to buy it online or order it from CVS, but some find it edible and more like "food" than the drink.

    Lastly, keep up on the fiber - you might want to do the stir-in fiber supplements if you are not getting enough fiber in your food.

    It will pass - Doug started getting his taste back within weeks of the end of radiation. I'm still living for the day that red wine tastes good to him. . .
  • Bear2009
    Bear2009 Member Posts: 5 Member
    DominicM said:

    Food Ideas
    Thanx for the feedback thus far.....I too have probably wasted a lot of food just by experimenting....it's down to a matter of just avoiding the really absolutely horrible tasting stuff right now...cardboard diet certainly fits very well...one thing I did'nt mention was that my sense of smell also seems to have mostly gone as well, so it's difficult to even fool myself that the food actually smells good. I've had family bring over meals that I know are absolutley wonderful, but just hav'nt been able to palette most of it (of course the main idea behind the prepared meals is that it's less cooking for wife and kids). For christmas I've been well stocked with boost and ensure, so worst case scenario I can always do a quick chug to get my nutrition. Been keeping a positive attitude and I know I have to keep eating to avoid the PEG but there's nothing wrong with a little hope that there might be some kind of food out there than can break through this awfulness...good news to hear that taste can possibly return quickly...certainly that's something worth looking forward to !

    Food ideas
    After my 4 week of 6 of chemo & rad I lived on 3 extra large eggs over medium in the morning that was it.
  • Hal61
    Hal61 Member Posts: 655
    Egg Man 2
    Hi Dominic, like Bear, eggs were my main thing. I was on the tube during treatment, after my taste went. I could still swallow fine, but things tasted so bad, or the texture made me gag. When I began to eat, maybe a month after treatment end, eggs had flavor, and kept it. Like others, foods I could eat moved in and out of the lineup as weeks passed. Eight months from treatment, I can eat most things now, but nothing is 100%. But flavor is definitely back on the menu, and it will come back to you also.

    best, Hal
  • Hondo
    Hondo Member Posts: 6,636 Member
    Bear2009 said:

    Food ideas
    After my 4 week of 6 of chemo & rad I lived on 3 extra large eggs over medium in the morning that was it.

    Hi Bear
    I lived on watered down Grits during treatment that was all I could get down at times. Take care and welcome here to CSN.
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Dominic
    You are right everyone is different, just try soft foods at first, I lived on just Grits for a long time but the wife kept trying all kinds of different stuff, somehow it got me through. Your taste normally comes back between 2 months to one year, like you said it depends on the person and how bad the treatment affected your body.

    Take care and welcome to CSN
    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    DominicM said:

    Food Ideas
    Thanx for the feedback thus far.....I too have probably wasted a lot of food just by experimenting....it's down to a matter of just avoiding the really absolutely horrible tasting stuff right now...cardboard diet certainly fits very well...one thing I did'nt mention was that my sense of smell also seems to have mostly gone as well, so it's difficult to even fool myself that the food actually smells good. I've had family bring over meals that I know are absolutley wonderful, but just hav'nt been able to palette most of it (of course the main idea behind the prepared meals is that it's less cooking for wife and kids). For christmas I've been well stocked with boost and ensure, so worst case scenario I can always do a quick chug to get my nutrition. Been keeping a positive attitude and I know I have to keep eating to avoid the PEG but there's nothing wrong with a little hope that there might be some kind of food out there than can break through this awfulness...good news to hear that taste can possibly return quickly...certainly that's something worth looking forward to !

    Sense of smell gone, too.
    Yeah, if smell is gone too you are pretty much not going to taste much of anything for a while. I'm just happy you can still swallow regular food tho. That's great. Keep trying to find something that you can taste and keep eating and getting in enough cals, nutrition and fluids. Sweet potatoes are very nutritious with yams a close second. Easy to swallow and have fibre.
  • GraceLibby
    GraceLibby Member Posts: 88
    Lack of taste
    Canned fruit worked well for a while. Mashed potatoes, yogurt, smoothies, it's all pretty much going to be trial and error for each meal. Yes, your appetite is going to take a hit but you have to make sure to get in your alloted number of calories. Most of us had a PEG tube - don't be afraid to use it or to get one if you feel you aren't eating well. Getting adequate nutrition & hydration is vital to getting through treatment and recovery. If you do resort to using your PEG for 100% of your nutrition, make sure you keeping swallowing, even if it's just 10 small sips of water a day.

    To answer your question, I'm about 2 1/2 months out of treatment and I can taste just about everything - the question is for how long. Sweets only last about 2 or 3 bites. Can't tolerate spicy foods just quite yet.
  • Dragons7-7-2010
    Dragons7-7-2010 Member Posts: 79
    food suggestions
    DominicM,

    I am 6 weeks post treatment SCC tonsil cancer stage 3 HPV+, 3 treatments of cisplatin, doxetaxel, 5FU 3 weeks apart with 30 rads. I finished radiation treatment December 3, 2010 and chemotherapy November 30th. I managed without a PEG. Though in my case I did have weight to lose so that was not so bad in my mind but the doctors were upset with me. I still have significant taste loss but there are foods that worked for me:

    Pasta with alfredo sauce - home made, store bought and from a restaurant. Specificaly, from the store I liked Barilla alfredo and pasta found in the refridgerated section.

    Cheese, any kind worked for me but expecially sharp cheddar left out at room temperature

    Salad dressing: I put blue cheese or ranch dressing on many things that helped them go down.

    Soups: Homemade turkey / chicken broth helped when I had no appetite
    New england clam chowder

    yogurt - particularly vanilla and especially greek yogurt as it is more nutritious and has more calories and protein

    eggs, scrambled, sunny side up etc.

    Carrot Juice - I like Bolthouse Farms or Odwalla

    Canned Asparagus is very soft and easy to get down to give you a source of green vegetables
    Avocados

    canned smoked vienna sausages

    and then there is the baby food route I found stage one pears a good fruit source

    Much depends on if you get mucositis / stomatitis or thrush - sores in your mouth.
    I got all three and so much of what people considered bland would burn my mouth and throat

    Finally, if you have one near you I found Smoothie king to be a great source for nutritious shakes / smooothie. Partcularly the peanut power plus, I like the plain vanilla or the chocolate as it has almost 1500 calories and lots of protein if you get the supersize. And it has a healthy source of sweetener compared to fast food type places.

    And remember water water water - hydrate hydrate hydrate
    That was my biggest issue. And if you lose your taste for water as I did then try adding either mint leaves, lemon slices, lime slices, cucumber or orange slices to the water.
    At one point in my first week all water tasted like salt water and that made it difficult to get my daily water intake as doctor ordered.

    I highly recommend a recipe / cancer advice book I got from MD anderson

    Eating Well Through Cancer authors Holly Clegg and Gerald Miletello MD
    I am sure you can order it online via amazon etc
    ISBN 978-0-9610888-8-0 should help you locate it.
    or check out how to order it via the website mentioned on the book back cover http://www.hollyclegg.com/

    Hope this helps and feel free to send me a message if you would like any more food tips.
    ~ Eileen Cibil AKA Dragons 7-7-2010
  • scottied
    scottied Member Posts: 36 Member
    DominicM said:

    Food Ideas
    Thanx for the feedback thus far.....I too have probably wasted a lot of food just by experimenting....it's down to a matter of just avoiding the really absolutely horrible tasting stuff right now...cardboard diet certainly fits very well...one thing I did'nt mention was that my sense of smell also seems to have mostly gone as well, so it's difficult to even fool myself that the food actually smells good. I've had family bring over meals that I know are absolutley wonderful, but just hav'nt been able to palette most of it (of course the main idea behind the prepared meals is that it's less cooking for wife and kids). For christmas I've been well stocked with boost and ensure, so worst case scenario I can always do a quick chug to get my nutrition. Been keeping a positive attitude and I know I have to keep eating to avoid the PEG but there's nothing wrong with a little hope that there might be some kind of food out there than can break through this awfulness...good news to hear that taste can possibly return quickly...certainly that's something worth looking forward to !

    Use your peg tube!!!!!!!!! thats what its there for!!!
    I was like you and tried as long as I could to stay away from the peg tube, but in hindsight I wish that i would have started using it way earlier and I probably wouldnt have lost nearly as much weight. Once you lose the weight its a real b*tch to get it back on. I tried to stay away from the peg tube (mostly and ego thing) when I should have been using it in addition to eating. Dont think your going to get addicted to it and never eat again. Look at it as a free shot to put calories and nutrition in your stomach. I lost 35 lbs through treatment and most of it happened before i ever used the peg tube, once I did i wished that i started using it alot earlier and i wouldnt have lost as much weight as fast as i did.
    ps: my taste started coming back about a moth or two after treatment was done, but it was slow coming back ( different taste came back at different times).

    I hope this helps and good luck with the rest of your treatment.
  • ekdennie
    ekdennie Member Posts: 238 Member
    food
    hey dominic,
    I had 30 IMRT treatments, lost some sense of taste and smell. eating was hard for while due to sores, but not as bad as many people. swallowing was only hard for the two weeks post treatment. I relied on Boost for most of my meals to act as a supplement, but it tasted horrible. I just drank it to get nutrition. the things I did find that tasted okay were cheese based products. they tasted stronger and more intense, but if a meal had cheese or milk...some form of dairy then I could taste it a little better. as a result I would make homemade alfredo sauce (without any pepper) and then refrigerate what I couldn't eat at one sitting. then I would make a larger batch of pasta, refrigerating most of it when it was al dente, but overcooking some so it would go down easier. then for my next meal I would take a handful of precooked pasta, add it some boiling water until it was overcooked to the correct level, then after I drained it I would add one big tablespoon of the alfredo sauce until well coated. I made the sauce with heavy cream or half and half, parmesan, and regular butter. I would also drink a full glass of whole milk with each meal...and I hate the way milk tastes, but I couldn't taste it if I added anything to it, chocolate syrup tasted like cocoa powder.
    I also would eat stoffer's sweddish meatballs...those still taste different than before radiation, but they are soft enough that they don't hurt and the taste was pretty mild.
    for me, any spices, even the mild ones are very strong, so I limit foods with basil, pepper, etc. I love spicy food and I hate that I can not eat salsas, sushi (fully cooked for now) with spicy sauce or wasabi, and pasta with red pepper flakes and garlic....but I will get to eat them again someday.
    I found that I have most of my sweet back...I am about 8 weeks post treatment. I still have a hard time with sour...pickles just taste odd. I can taste some savory, but it tastes so different that it is hard to bring myself to eat it. A lot of the foods I loved before I just can't stand right now. I have found that turkey that has been cooked where it is still moist tastes a lot better than chicken. I can't stand pork and beef only tastes good if it is very very fresh. I find I have to see my butcher so that the meat tastes good. I don't mind paying a little more for the meat...we just use a lot less and it tastes better for me.
    I recommend trying small amounts of what your family is eating and see what tastes good to you. I did find that shrimp lo mien from one of the better chinese restaurants in town tasted even better than I had remembered. oh, and I can eat shrimp. I hadn't expected to be able to taste it, but it tastes okay. i mostly just avoid those foods that I know taste bad for about a week...then I try again. I am able ot eat a wider range this week than last week, and so on.
    wishing you good luck in finding foods you can enjoy...just be patient and stubborn. eat for health now, flavor soon! oh, and not being able to smell can really affect how foods taste...you could add garlic to your food to help you smell it better...if you don't mind how garlic tastes that is!
  • timreichhart
    timreichhart Member Posts: 194
    ekdennie said:

    food
    hey dominic,
    I had 30 IMRT treatments, lost some sense of taste and smell. eating was hard for while due to sores, but not as bad as many people. swallowing was only hard for the two weeks post treatment. I relied on Boost for most of my meals to act as a supplement, but it tasted horrible. I just drank it to get nutrition. the things I did find that tasted okay were cheese based products. they tasted stronger and more intense, but if a meal had cheese or milk...some form of dairy then I could taste it a little better. as a result I would make homemade alfredo sauce (without any pepper) and then refrigerate what I couldn't eat at one sitting. then I would make a larger batch of pasta, refrigerating most of it when it was al dente, but overcooking some so it would go down easier. then for my next meal I would take a handful of precooked pasta, add it some boiling water until it was overcooked to the correct level, then after I drained it I would add one big tablespoon of the alfredo sauce until well coated. I made the sauce with heavy cream or half and half, parmesan, and regular butter. I would also drink a full glass of whole milk with each meal...and I hate the way milk tastes, but I couldn't taste it if I added anything to it, chocolate syrup tasted like cocoa powder.
    I also would eat stoffer's sweddish meatballs...those still taste different than before radiation, but they are soft enough that they don't hurt and the taste was pretty mild.
    for me, any spices, even the mild ones are very strong, so I limit foods with basil, pepper, etc. I love spicy food and I hate that I can not eat salsas, sushi (fully cooked for now) with spicy sauce or wasabi, and pasta with red pepper flakes and garlic....but I will get to eat them again someday.
    I found that I have most of my sweet back...I am about 8 weeks post treatment. I still have a hard time with sour...pickles just taste odd. I can taste some savory, but it tastes so different that it is hard to bring myself to eat it. A lot of the foods I loved before I just can't stand right now. I have found that turkey that has been cooked where it is still moist tastes a lot better than chicken. I can't stand pork and beef only tastes good if it is very very fresh. I find I have to see my butcher so that the meat tastes good. I don't mind paying a little more for the meat...we just use a lot less and it tastes better for me.
    I recommend trying small amounts of what your family is eating and see what tastes good to you. I did find that shrimp lo mien from one of the better chinese restaurants in town tasted even better than I had remembered. oh, and I can eat shrimp. I hadn't expected to be able to taste it, but it tastes okay. i mostly just avoid those foods that I know taste bad for about a week...then I try again. I am able ot eat a wider range this week than last week, and so on.
    wishing you good luck in finding foods you can enjoy...just be patient and stubborn. eat for health now, flavor soon! oh, and not being able to smell can really affect how foods taste...you could add garlic to your food to help you smell it better...if you don't mind how garlic tastes that is!

    about food
    I had same problem as u Dominic or should I say everybody what I did was I was able to eat chicken noodle soup all the way up to my radiation and after I started radiation I pretty much either didnt eat or eat little because everything tasted like crap. I still had issues after all treatments was done I would say probably 4 weeks after treatments was done I was able to start eating again but smaller and I use water to get the food down but so far I can taste everything I eat and course I have to have water to wash it all down. But Dominic my buddy its going to get alot better down the road trust me its currently working for me. Keep your thoughts and prayers up and you will get through this battle.
  • DominicM
    DominicM Member Posts: 18
    Thanx so much everyone. Today represented my 18/35 rad treatment so am happy to hit the half-way mark. Doc was suprised that I don't have pain swallowing so he thinks that may be a good sign that I may be able tolerate the rest of the treatment. Due to only losing a few lbs so far Docs have not been pushing for a PEG. (It's curious how some places recommend it before treatment starts and some don't). Last week was a chemo week plus had thrush so am not suprised that I lost a pound...hopefully will get it back as things kind of return to noemal this week.
    Definately want to try some lo-mein and chow-mein....and try some lemon and orange flavored water..... I could definatly be doing better with the liquids considering the kidney toxicity of the cisplatin.
    Daily regimen right now is three eggs, couple glasses of milk, bowl of cereal, oatmeal, and one boost plus drink. Thinking about switching to two boost drinks after my weigh-in today.
    Off for now...3 year old needs the computer to play Dora !!!
  • timreichhart
    timreichhart Member Posts: 194
    DominicM said:

    Thanx so much everyone. Today represented my 18/35 rad treatment so am happy to hit the half-way mark. Doc was suprised that I don't have pain swallowing so he thinks that may be a good sign that I may be able tolerate the rest of the treatment. Due to only losing a few lbs so far Docs have not been pushing for a PEG. (It's curious how some places recommend it before treatment starts and some don't). Last week was a chemo week plus had thrush so am not suprised that I lost a pound...hopefully will get it back as things kind of return to noemal this week.
    Definately want to try some lo-mein and chow-mein....and try some lemon and orange flavored water..... I could definatly be doing better with the liquids considering the kidney toxicity of the cisplatin.
    Daily regimen right now is three eggs, couple glasses of milk, bowl of cereal, oatmeal, and one boost plus drink. Thinking about switching to two boost drinks after my weigh-in today.
    Off for now...3 year old needs the computer to play Dora !!!

    about the food ideas
    Dominic just keep up with the eating what you currently eating and you shouldn't have to worry about the weight problem but also beware that you may loose more lbs during the radiation so just keep in mind you might have to get PEG tube in place if you lose any more weight because I know my chemo doctor really pushed to get a peg tube in place but my radiation doctor didnt push it. Just think food is your new meds during this cancer battle. Keep your thoughts and prayers straight then you will beat this nasty cancer.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    DominicM said:

    Thanx so much everyone. Today represented my 18/35 rad treatment so am happy to hit the half-way mark. Doc was suprised that I don't have pain swallowing so he thinks that may be a good sign that I may be able tolerate the rest of the treatment. Due to only losing a few lbs so far Docs have not been pushing for a PEG. (It's curious how some places recommend it before treatment starts and some don't). Last week was a chemo week plus had thrush so am not suprised that I lost a pound...hopefully will get it back as things kind of return to noemal this week.
    Definately want to try some lo-mein and chow-mein....and try some lemon and orange flavored water..... I could definatly be doing better with the liquids considering the kidney toxicity of the cisplatin.
    Daily regimen right now is three eggs, couple glasses of milk, bowl of cereal, oatmeal, and one boost plus drink. Thinking about switching to two boost drinks after my weigh-in today.
    Off for now...3 year old needs the computer to play Dora !!!

    You are doing great, Dominic!
    I think you are doing so well. Maybe add an extra boost or ensure a day. Coconut water is great for hydration and potassium and replacing electrolytes, better than sports drinks. Plus more calories than water. Not as many as sports drinks though. Plus gatorade gave me terrible heart burn and burns my mouth even now i cant tolerate it but i can do coconut water. At your stage of treatment with out a peg tube I wouldn't consume or drink anything with out calories.

    I lost my taste within four rads and by five I couldn't smell. By the Sunday after the tenth one, that was my last meal for a long time. That next Monday after rads, the roof of my mouth came off in a huge sheet. My mouth and tongue wouldn't stop bleeding. So if you have 18 down and you are eating that much by mouth, you are doing great! Keep it up!

    I am so glad that you want to keep trying things. That's wonderful. Good luck with the lo mien and the chow mien. :)
  • Army_Guy
    Army_Guy Member Posts: 53
    scottied said:

    Use your peg tube!!!!!!!!! thats what its there for!!!
    I was like you and tried as long as I could to stay away from the peg tube, but in hindsight I wish that i would have started using it way earlier and I probably wouldnt have lost nearly as much weight. Once you lose the weight its a real b*tch to get it back on. I tried to stay away from the peg tube (mostly and ego thing) when I should have been using it in addition to eating. Dont think your going to get addicted to it and never eat again. Look at it as a free shot to put calories and nutrition in your stomach. I lost 35 lbs through treatment and most of it happened before i ever used the peg tube, once I did i wished that i started using it alot earlier and i wouldnt have lost as much weight as fast as i did.
    ps: my taste started coming back about a moth or two after treatment was done, but it was slow coming back ( different taste came back at different times).

    I hope this helps and good luck with the rest of your treatment.

    Use your peg tube!!!!!!!!! thats what its there for!!!
    I let myself get grossly overweight before my diagnosis. During treatment I began using that PEG and hated it. As a result, I am 5 months post treatment right now and I've lost 78 lbs. Haven't felt this good since I was on active duty. My old clothes fit (even old uniforms) and I'm delighted.

    After loss of 50 lbs I joined weight watchers and sensibly lost the rest.Just waighting for my sweet tase buds to kick in...everything else seeems to be okay.