RE: What do you crave.
Comments
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Varies
You will get 30 people responding with 30 different experiences.
Mark is 5+ weeks out...eating with a good appetite, beginning to taste food so he can enjoy it, eats whatever he wants. Mouth is a little dry, so breads can be hard. No taste for sweet and spicey is not enjoyable.
Kim0 -
Howdy from Cypress, TX
Hi KristynRuth, I'm down the road from you just north of Houston in Cypress...Howdy!
I'm now 14 weeks post treatment (35 rads & 7 x once weekly Cisplatin).
I've been eating...for about the last six weeks, but not like I used to. I'm not able to eat like the old days due to lack of salvia, so it's a sip of milk or water with each bite. Taste is almost there. Breads are out.
Hope you are hanging in there. Waiting for the treatments to begin was an anxious time for me. Thank goodness for my wife!
Best to you, the new baby and your family.
Chuck.0 -
Time
For me it's still a work in progress and I'm 14 months out. As for eating, maybe 6+ weeks after radiation.
If you are asking about the ability to be similar to before, closer to 6 - 8 months, and still getting there. I can eat normally without having to drink any extra water than before. I can taste and produce saliva around 70 - 80% as well as before.
But like I said, I'm 14 months out and still improving. Like everything relating to treatment, time isn't measured in days. It's more like weeks and months. When it comes to saliva reproduction and taste improvement, more months than weeks, definitely not days.
Best,
John0 -
Cravings
The further out from treatment the easier it is to eat. But there may be things you may never be able to eat again. I can no longer eat any solid red meat (steak), but I can eat just about anything else. My issues are more because I don't have any molars to grind the food up and my tongue is fastened to the floor of my mouth. This gives me very limited movement with my tongue so I can only eat on the left side of my mouth.
While going through treatments I would constantly watch FoodTV and made a list of foods I wanted to eat again, got recipes of things I thought sounded good, and made a list of where I wanted to eat. I have since lost the lists, but I do try and eat like I used to.
Things other than bread that might cause problems.
Peanut butter - try whipped and put it on something warm to melt it, helps it not stick
Stringy Cheese - tends to gum up in the mouth
Over cooked pasta - tends to gum up
Re-heated chicken - reheating causes it to become dry
Take small bites and make sure things are going down properly. When they don't you will know it quickly and get what is stuck out fast. When this happens to me, even though I can still breathe, it is a freaky feeling.0 -
EatingSASH said:Cravings
The further out from treatment the easier it is to eat. But there may be things you may never be able to eat again. I can no longer eat any solid red meat (steak), but I can eat just about anything else. My issues are more because I don't have any molars to grind the food up and my tongue is fastened to the floor of my mouth. This gives me very limited movement with my tongue so I can only eat on the left side of my mouth.
While going through treatments I would constantly watch FoodTV and made a list of foods I wanted to eat again, got recipes of things I thought sounded good, and made a list of where I wanted to eat. I have since lost the lists, but I do try and eat like I used to.
Things other than bread that might cause problems.
Peanut butter - try whipped and put it on something warm to melt it, helps it not stick
Stringy Cheese - tends to gum up in the mouth
Over cooked pasta - tends to gum up
Re-heated chicken - reheating causes it to become dry
Take small bites and make sure things are going down properly. When they don't you will know it quickly and get what is stuck out fast. When this happens to me, even though I can still breathe, it is a freaky feeling.
Glenn is 4 1/2 weeks out and eating the following:
Eggs
Mashed Potatoes
Soups - Cream of Broccoli/cheese, Egg Drop
Pudding
Pasticcio (Greek hamburger and pasta/cheese casserole - go figure)
Steak-ums (cut up in eggs)
White clam sauce
Pasta
Can drink Ice Water and other cold liquids
He tells me eating is a chore. Dry mouth, etc. First few bites have taste then nothing. The RD on his team tells me that's called "Taste Fatigue"
No sweet taste buds yet so Chocolate pudding tastes a little like bitter Cocoa.
I know he really wants a Peanut Butter and Jelly Sandwhich.0 -
What to eat
Hi Kristyn, I'm 5 months past treatment, and I can eat a lot of things, but most of them don't like me yet. "Taste fatigue," as mentioned, happens with anything tasty. For me also, eating is still a chore. It's easiest for me to eat eggs and canned fruit like fruit cocktail. Strawberries and other moist fresh fruit are also good. I still don't have much if any saliva. I guess people just guestimate their saliva increases, but mine is still on the dry side. Like Kimba said, this symptom seems to vary a lot between people.
Hal0 -
ThanksHal61 said:What to eat
Hi Kristyn, I'm 5 months past treatment, and I can eat a lot of things, but most of them don't like me yet. "Taste fatigue," as mentioned, happens with anything tasty. For me also, eating is still a chore. It's easiest for me to eat eggs and canned fruit like fruit cocktail. Strawberries and other moist fresh fruit are also good. I still don't have much if any saliva. I guess people just guestimate their saliva increases, but mine is still on the dry side. Like Kimba said, this symptom seems to vary a lot between people.
Hal
Thank you everyone for giving me your experience. I'm sure as I am, all of you were a bit scared before you started too! It's nerve racking not to know exactly what to expect!
But it's good to know it'll eventually be ok.0 -
Hi Kristy
You are right it is different for everyone, I was able to start tasting food about 2 ½ months after treatments stopped, and as time goes on a little more of the taste keeps getting a little better. The one problem is sweet stuff, I can only taste something sweet once or twice and then the taste is gone and it is like I know something is there but not sure what it is.
I guess the main part is just glad to be alive, all the best to you
Hondo0 -
5 weeks
Hi Kristyn, I was able to eat about 5 weeks post treatment, not everything, but, enough to look forward to meal times again. Although I couldn't taste or eat while having treatment, I was addicted to cooking shows and began cooking like a masterchef, my family loved it, I couldn't taste anything so maybe they were just being kind. I now LOVE to cook and try new recipes, I make my food much wetter than before, I thought it would never get better, but, it did. Are you having IMRT or normal radiation. Cheers Jen0 -
Taste
I'm nine weeks post treatment and had surgery, rads and chemo. I could always eat anything I wanted throughout the treatment, but I just didn't want to. The problem was that nothing tasted good.
My sense of taste began to return about two weeks post treatment. It steadily has been returning and getting better ever since. I still find things like commercially processed tomatoes or products containing beef to have an off taste. The sense of sweetness is fleeting after the first bite. Starchy foods can be the same way to a lesser degree.
Otherwise, I find fresh veggies, grain products and most fresh fruits to taste the way they should. Chicken and fish seem to be near normal as well. Dairy products are good. I've developed a passion for spicy, pickled things that I never had before.
My saliva function is less than before, so dry foods like bread or crackers require water as a chaser. Things are getting better each week....
Rush0 -
Arrrrrgggghhhh.Kimba1505 said:Varies
You will get 30 people responding with 30 different experiences.
Mark is 5+ weeks out...eating with a good appetite, beginning to taste food so he can enjoy it, eats whatever he wants. Mouth is a little dry, so breads can be hard. No taste for sweet and spicey is not enjoyable.
Kim
For Kim,
Mark's mouth IS A LITTLE DRY??? A LITTLE? ARRRRGGGGHHHHH! Mine is like the Sahara at 3 months out! At night, I get so dry that I wake up snorting like a pig with my lips and my tongue stuck to my teeth. I have to hide my head under the pillow. I'm afraid my husband is going to wake up and see me like that. Eeeeeeeeeeekkkkkkk!0 -
Three months out from treatment.
I'm taking all my food by mouth, and have been since about a month out from treatment. Taste started coming back three or four weeks after treatment ended, and I think I'm at about 60% of normal. No saliva, so breads, pastas and meats are hard. I can eat them, with water or tea as a chaser. Fresh fruits and veggies are yummy. Dairy works really well for me. I end up eating eggs almost daily, as they are so easy to eat. Sweet things and desserts are not appealing at all. I have to eat slowly, chew well, and take tiny bites. A lot of foods leave me with a really sticky mouth, and without saliva a lot of things stick to my teeth, so I floss and brush after almost every meal or snack. I use the Biotene rinse, mouthwash, gell, liquid and paste. I carry them everywhere. I am able to eat out with friends, but I can usually only get part way through my meal before we run out of time. At this point, I'm wasting a lot of food, but I've decided not to worry about that, and just concentrate on the eating practice. Occasionally, I still need to spit things back out or hock them up out of my throat. TMI, sorry.
Deb0 -
Same here DebD Lewis said:Three months out from treatment.
I'm taking all my food by mouth, and have been since about a month out from treatment. Taste started coming back three or four weeks after treatment ended, and I think I'm at about 60% of normal. No saliva, so breads, pastas and meats are hard. I can eat them, with water or tea as a chaser. Fresh fruits and veggies are yummy. Dairy works really well for me. I end up eating eggs almost daily, as they are so easy to eat. Sweet things and desserts are not appealing at all. I have to eat slowly, chew well, and take tiny bites. A lot of foods leave me with a really sticky mouth, and without saliva a lot of things stick to my teeth, so I floss and brush after almost every meal or snack. I use the Biotene rinse, mouthwash, gell, liquid and paste. I carry them everywhere. I am able to eat out with friends, but I can usually only get part way through my meal before we run out of time. At this point, I'm wasting a lot of food, but I've decided not to worry about that, and just concentrate on the eating practice. Occasionally, I still need to spit things back out or hock them up out of my throat. TMI, sorry.
Deb
I am 8 months out now and taste is back about 70%. I still have the burning sensation when acidity stuff, like tomatoe sauces etc.
I am not eating quite as slow as i was first out of treatment, but the swallowing is taking a step back, and things are getting caught up again
Dry mouth is returning, I am drinking less water during the day, but still have to chase things. The breads are still a little tough. Dry mouth is really worse at night for me. taking a step back there also.
have follow up this week with both med & rad oncs. Will see what they have to say. To me though it is just part of the new normal
Wishes & Prayers for everyone
Dave0 -
the new normalFire34 said:Same here Deb
I am 8 months out now and taste is back about 70%. I still have the burning sensation when acidity stuff, like tomatoe sauces etc.
I am not eating quite as slow as i was first out of treatment, but the swallowing is taking a step back, and things are getting caught up again
Dry mouth is returning, I am drinking less water during the day, but still have to chase things. The breads are still a little tough. Dry mouth is really worse at night for me. taking a step back there also.
have follow up this week with both med & rad oncs. Will see what they have to say. To me though it is just part of the new normal
Wishes & Prayers for everyone
Dave
I really like that: "just part of the new normal." I think we all have had to adjust and accept the new normal. I will never eat the same way again since radiation destroyed my salivary glands and scrambled the nerves in my mouth/throat. But I am so glad to still have the ability to eat through my mouth and breathe through my nose. I do miss singing, though. I don't think there is a name for my vocal range. If I can think up a smart-a** one, I will share it.0 -
4 weeks out now
Hi Kristyn, I had 35 rads and 3 cistplatin and am 4 weeks out from that. Treatment for me wasn't too rough. I noticed an improvement in my taste and eating after about 4-5 days. It has continued to improve weekly. I still have some dry mouth issues and certain foods are quite difficult to get down (bread, chicken white meat & spicy foods seem magnified about 5-10x). But each week I am eating more and different things and the taste of the food is also improving. Cheers
Jimbo0 -
eating - food suggestions anyone?miccmill said:Eating
Glenn is 4 1/2 weeks out and eating the following:
Eggs
Mashed Potatoes
Soups - Cream of Broccoli/cheese, Egg Drop
Pudding
Pasticcio (Greek hamburger and pasta/cheese casserole - go figure)
Steak-ums (cut up in eggs)
White clam sauce
Pasta
Can drink Ice Water and other cold liquids
He tells me eating is a chore. Dry mouth, etc. First few bites have taste then nothing. The RD on his team tells me that's called "Taste Fatigue"
No sweet taste buds yet so Chocolate pudding tastes a little like bitter Cocoa.
I know he really wants a Peanut Butter and Jelly Sandwhich.
Well, I really miss sushi. not sure I will be able to have it post treatment just cause its raw fish etc....but one can dream.
I found the food lists suggestions helpful. so far it has been trial and error. My sister came to Houston from New jersey to help me and I feel bad she is trying to make things to get me to eat and right now liquid seems to be all my mouth can handle. that and cheese.
Anyway, thanks for the tips. I may start a new thread so I am not high-jacking this one for food tips during what works when you have mouth sores and what is to be avoided.0 -
Mac N CheeseDragons7-7-2010 said:eating - food suggestions anyone?
Well, I really miss sushi. not sure I will be able to have it post treatment just cause its raw fish etc....but one can dream.
I found the food lists suggestions helpful. so far it has been trial and error. My sister came to Houston from New jersey to help me and I feel bad she is trying to make things to get me to eat and right now liquid seems to be all my mouth can handle. that and cheese.
Anyway, thanks for the tips. I may start a new thread so I am not high-jacking this one for food tips during what works when you have mouth sores and what is to be avoided.
One thing you may be able to eat is good ol mac n cheese out of the box. Over cook the noodles, its a cooking sin, I'm a chef at heart, but the softer they are the easier it is on you. Add extra milk and butter to make them soupy-ish, like swimmin in a little lake of milk and butter. Its almost like mac-n-cheese soup/stew. you can add peas and tuna for protein and green. Try it plain first to see how you handle it then add more as you can. Good amount of calories..0 -
Thanks Jimbo! That reallyJimbo55 said:4 weeks out now
Hi Kristyn, I had 35 rads and 3 cistplatin and am 4 weeks out from that. Treatment for me wasn't too rough. I noticed an improvement in my taste and eating after about 4-5 days. It has continued to improve weekly. I still have some dry mouth issues and certain foods are quite difficult to get down (bread, chicken white meat & spicy foods seem magnified about 5-10x). But each week I am eating more and different things and the taste of the food is also improving. Cheers
Jimbo
Thanks Jimbo! That really helps b/c I also will have 35 rads and 3 cisplatin, I start next week. I'm so nervous!0 -
14 Months OutKristynRuth86 said:Thanks Jimbo! That really
Thanks Jimbo! That really helps b/c I also will have 35 rads and 3 cisplatin, I start next week. I'm so nervous!
Similarly, I'm 14 months out, also had 3 cycles of Cisplatin, Taxotere, and 5FU, then seven cycles of Carboplatin with 35 daily head shots of radiation with Amifostine Injections. Amifostine is somewhat nasty while you are getting the daily injections. But is supposed to help with salivary function restoration or retention and less thick phlegm during the daily rads.
I'm in the neighborhood of around 70 - 80% regained taste and salivary function and still it's improving with time.
Best,
John0
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