very slow taste bud returns
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Does anyone know what percent
Does anyone know what percent of people who never get their taste back? I've looked for this info unsuccessfully.
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10 weeks
post-treatment is not really much time. At 2 shakes a day it is probably not enough. If you can eat solid foods and or shakes or puddings, macaroni or other noodles heavily buttered or cheese sauced eat all you can to get going again. Use butter and anything calorie rich any food that is high in fat and calories to put on or maintain weight. You may have to force yourself to eat even though it tastes lousy or has no taste at all. Many of us had flavor issues and times where things had poor or no taste. I remember going through treatments and at a certain point food has no flavor at all but had to force myself to eat and get a certain amount of calories to maintain my weight. Then at some point radiation swelled my throat to the point I couldn't swallow anything anymore and I was completely depending on my feeding tube. Thank God I had that. And it was 4-5 months after that I could swallow anything and when I could eat food again everything was not tasting good but had a flavor to it. Probably took over a year maybe 2 that I had decent flavor out of foods and it started and just got better a little bit at a time and this was a slow progression didn't happen quickly. Today I say I get enough flavor out of food that I can at least enjoy eating. Percentage wise I would make a guess 60-70% or stretching 80% of original flavor back. You are not far out of treatment so you are going to still be tired, the treatment beats you up. I don't know what treatment you had but I had numerous chemo treatments and 35 radiation treatments and it takes a lot out of you. It was probably 4-5 months after treatment finished that I started feeling decent. Be patient-recovery for cancer treatment is measured in weeks and months, not days and weeks. I hope some of this helps just hang in there, eat all you can, exercise or walk and move around as much as you can don't sit too much and try to get back to your regular life as much as you can or what we call here "Your New Normal". God Bless and Good Luck.
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Some tastes will not come back
I am NED for 6 years. I would say I have about 75% of my original taste back. Sweet has never really returned For me. And my eating habits have changed. Water is always with me. Well done meats- not any more. Rare meat- juicy anything. I do eat healthy. I make a veggie shake every morning- kale' salad greens, blueberries, strawberries flax seed, green apple( just a slice) ginger ( just a small slice) isolate whey protein half a banana and 200 Mg of vitamin C. I mix it in the nutra bullet and drink it. That keeps me full until lunch time. I will say it was about 3-6 months after my last treatment that I was able to drink it because the radiation was making my throat burn every time I would attempt it. The point is that recovery is different for everyone. I remember my last treatment was a few weeks because Christmas and I actually thought we would be able to have our usual celebration meal. I was wrong. I moved my expectations to February my birthday and was wrong again. Your body has been through war. Let it recover. The new normal will become evident to you as time goes on. It’s not that bad- you are alive
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Very slow taste bud returns
Whoisjohngalt, I am 12 weeks out of radiation for throat cancer. My taste buds have started to wake up now. I think I have around 75% back. I am sorry to hear yours is moving slowly.
The lack of salivia is a different problem. I drank four 20 ounce (easy to carry) bottles of water on Saturday trying to keep my mouth hydrated. I still have shakes, pudding, mostly soft foods. Shrimp and fish are okay if I chew them well and swish with water while I am eating. Poultry and most bread is not worth the effort. Some veggies and fruit still burn, so it is a slow process learning what is okay to eat. LOTS of patience.
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Soup is the best
Even tho I'm getting rather tired of it, it goes down the best for me and plan on making a lot of different ones this fall and winter when I'm not near as busy. In the meantime I stock up on a brand called "Sam's Choice" that they sell at Walmart.
The chicken tortilla and veg. with ancient grains are my favorites and I try and doctor them up a little with some steamed spinach or cabbage, brown rice, rotel spicy tomatoes, etc.
Like somebody else mentioned, can't taste sweet at all..probably a good thing as I used to have quite the sweet tooth.
I get my nutrition one way or the other even if I can't taste it. Just chew it up and swallow it with water. Not easy tho.
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100%whoisjohngalt said:donfoo
Does your food taste normal now? How long did it take? Does any food taste bad to you now that you loved before?
Thank you
My taste returned fairly quickly. Some one else mentioned that it was like learning to taste all over again. Every flavor was so clean and tasty with zero salt or another spice. For that matter, any spice was too strong at first. Over time(6 months or so) I got all my tastes back, the only remaining difference was spicy hot. Any hot food was just on fire. It took well over a year, closer to a couple before I could tolerate (and enjoy) really spicy foods. Even today, my head sweats whereas it did not before. I am so grateful that my taste and eating came back 100%.
Many folks have varying level of lack of saliva. At first I had to drink much water too but over time, saliva production came back 100%. I do recollect mentioning to the RO rather impactfully to make sure of any zapping around the saliva glands. Must have been listening.
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Had taste now it going funky.
About 3-4 mo after treatment, taste & smell was very intense I could finally eat something other than shakes, soup, the usual soft foods. Had my first prime rib dinner with extra Vegatables & a Miller Lite Beer to help swallow the meat, tasted heavenly. Did great eating for months, pizza, steak, tacos, felt so blessed. Than one morning woke to Cloged up Saliva Ducts. Did daily rinses my Dentist gaveme that promoted saliva, I would message my neck area constantly to keep it moving the best I could. If it remained clogged they would have to remove them so I worked hard & stayed positive. Was sent to a Specialist in Orlando that did surgery to open the ducts. Shot down she said no way it would work. So kept searching till I found one in Baton Rouge that high reviews for success. Fly to see him , uses some dialtors & scheduled surgery the next day. Woke from surgery with a thumbs up from his end. That night No dry mouth was wonderful. Next day mouth full of mucus & dry. Kept working with rinses till I saw him for my follow-up. He said I told you I could open them but could not guartee the quality. I have Chemo saliva, thick, ropy & still have horrible dry mouth 24 seven. Due to a sodium issue can’t drink just water have to drink electrolyte water I get from Amazon, can’t go anywhere without something to drink. Can’t suck on candy or xlymelts nothing dissolves. This has caused my taste buds to change to where things don’t taste the same, often worse than before. Once again told Delayed Chemo/ Rads. So No Saliva, & No decent taste buds appears for life. Sucks to start outwell & just keep going downhill. No thyroid. So if you don’t have it at the beginning just give it time. My Chemo buddy had NO taste & low saliva. Being a singer she needs moisture. She has had a tough two yrs but taste is back, saliva is back, she can eat & is gaining weight back. Everyone is different. Hang in there
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Taste Buds
I'm a little over 18 months out from 35 Proton treatments and 5 chemo's. My taste buds started to come back after about 3 months, but my favorite foods were just horrible tasting. My taste is about 90 percent back now but can't eat anything well done anymore. I lost 35 lbs from 185 to 150, back up to 160 now and holding steady!!!
The other horrible thing was the feel of food in my mouth, that got better after about 9 months.
Don
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My husband was around 13
My husband was around 13 weeks post treatment (radiation and cetuximab) when tastes really started coming back. He had been taking zinc and occasionally sucking on a lemon mint thing (Spry brand...I had read somewhere that they would help). Lots of water too, to keep his mouth moist. He is now about 9 months post treatment and eating/drinking pretty much anything he wants. He says bread is still too dry for him, and sweets sometimes taste a little off, but for the most part, tastes are there. Try the lemon mints! My husband could taste those pretty soon after treatment. I'll try and add a link to the ones we used. https://www.amazon.com/Spry-Xylitol-Mints-Natural-Lemon/dp/B007BTOLP8/ref=sr_1_2_s_it?s=grocery&ie=UTF8&qid=1535763092&sr=1-2&keywords=spry+lemon
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I tried the zinc
Didn't do anything for me and my taste keeps getting worse instead of better. Where I thought I had close to 30-40 % back for a little while, I have virtually none as I write this. Made a pot of chili and it tastes like hot water with a little meat in it. No hope now...
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Taste Buds
I am about 16 months out from radiation/chemo for SCC left BOT with spread to nodes on right side. Pretty aggressive treatment.
Sweets taste so so at best while most everything else is about 80% back to normal. On the bright side, the foods I need least are the ones that taste the worst, and that has really contributed to an improved general health. It can frustrating to not enjoy an ice cream with the family like I used to, but I have adapted.
Other issues are it takes longer to eat, it is somewhat tougher to swallow, and I need to drink some water while I eat to assist in getting some things down. When I consider that a week after treatment I was using a feeding tube for everything, even water, it is easy for me to see how blessed I truly am despite some of these changes.
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