I'm confused about how long taste buds will take to function again. My dietitian said a month but everyone here and all over the internet says months or years or not at all. If your taste buds took a year to return, does that mean you drank Ensure for a year or forced down a variety of food when it tasted like mud or metal? I've started to feel sick of chocolate milkshakes and I'm beginning to lose some weight so I tried fruit and good quality vanilla ice cream with my Fortisip. It tasted like mould and had to be poured down the sink. Irony is that I'm really hungry.

There don't see to be many people like me who had 30 rads with no chemo and to only one side of the face and neck. Is there anybody out there who experienced that and who had taste buds return earlier? Because of a public holiday, I won't see the RO until 9 June. She should be able to give me an answer tailored to my treatment but right now I'm feeling quite depressed about my intake. I know there are people on permanent feeding tubes but right now I feel sorry for myself because I haven't been able to eat since 18 February - apart from soups and soft food - and now I'm looking at a long, long time of Fortisip. Don't think I can continue the chocolate ice cream and chocolate syrup which made it half way palatable because I just don't think they are good for me.

I know what the answer is, I have to man up and experiment but I just felt like a whinge.

I think tastebuds are one if the things that are very individual in the recovery time. I have almost full taste back. The only two lagging taste profiles are red meat and chocolate. They have a flavor, just not tasty good as they used to be.

I would think that after a month you will see significant improvement. Then it's gradual from there.

I did go thru a bout of hyper smell ability which made everything smell rotten. That lasted about 2 weeks if I recall correctly.

Hi Alpaca,

If it were me, I wouldn't be too quick to ditch the choc (or any other flavor) milkshakes. In your old reality, it would be a reasonable thing to conclude that they are bad for you and so to quit them.

But the relevant words in the message are "In your old reality..."

What is that? It's a dream, it's not your reality and hasn't been since you started on this path.

Your reality is what it is, for better or worse. And in this reality, you are going to need those raw calories from whatever source you can get them. Fat, protein, carbohydrates, your body isn't going to give a rotten rodents rear end where the calories come from; it's going to burn through all you can give it as fast as you can give them to it.

The alternative to consuming those calories in food, is consuming them from your body, and that means lean muscle as well as body fat.

As a path to follow to get through this successfully, I can't recommend that one.

Of course, if you have a PEG installed, both the problems of 'boring' taste and that of consuming adequate nutrition go away.

HTH, and best wishes for your success with whatever you decide,

Bart

Every day from the start of rads thru at the very least the one year mark your need to take in a minimum of 2500 calories and 48-64 oz of water. Its up to you what you use to get those calories in. After what your body went thru it desperately needs every single one of those calories. It must rebuild both the damage the cancer did to you and also the treatments.

Recovery is a loooonnnngggg road!!!! It takes most of us a full 2 years to completely heal from rads. This includes the taste buds. Patients have said they notice gradual taste improvements even at the 2 year mark. Of course, everyone is different and will recover in their own timeframe. Since you didnt have chemo and 'only' 30 rad treatments you may bounce back slightly faster.

My advice would be its a little too early in your recovery process to be overly concerned with what is best for your body. Your focus must be on the daily calories and hydration intake. You will see many ups and downs during recovery. Once you are about 8+ weeks post rads you should be much more stable so I suggest waiting a few more weeks before you play around with your diet. Losing weight is a bad sign, it can quickly lead to malnutrition and dehydration which means hospitalization. I went down that path and felt horrible. After a couple stints in the hospital I wised up and worked harder to get the minimums in every single day.

Your sense of taste will improve... in time. One day out of the blue a new food will taste great and 2 days later it will taste like you pulled it from the bottom of the garbage can. Hang in there, it will get better. For every 2 steps forward be prepared to take one step back for the next few weeks.

Best wishes!!!

Many thanks, people. I needed your words of wisdom because the prospect of no taste for a long time has suddenly hit me. I'm feeling really babyish about it because I'm alone all week and when my family visit in the weekend I can't even share a meal with them. Boo hoo. I put my lack of acceptance down to not having discussed it enough when I did see the doctor, the staff not emphasizing it enough and the fact that I do feel quite well on the surface. I'm even bored. I always thought that boredom was only for people who lacked imagination but this morning, in a fit of pique I got a ladder out and trimmed the neighbour's hedge which is shedding millions of annoying little seeds onto my car. It felt so good to do something outdoors and physical even if I had to stop as soon as I had cut the worst seed pods off.

Bart, I'm going to have to carry out some of your cognitive strategies to stop this train of thought. It will pass by itself but might take a little while:) Love your turn of phrase which always brings a smile to my face.

My mom's RO also did not emphasize the lack of taste. I had read everything there was to read on the subject of radiation while waiting for the biopsy results so I prepared her for that, and knew it would be an adjustment because she was a massive foodie before getting sick.

However, the first "official" mention of the taste issue was on rad 9 when her radiology tech (who rocks hard) asked if she could still taste anything.

She said, "so far, so good."

He said, "not for long"

She lost salt that night between lunch and dinner.

Fortunately I had prepared her for it. But it worries me sometime what doctors downplay.

First, to Alpaca, let me just say this, [BLUSH!] I know you will feel free to PM me to ask for specific advice anytime you want.

But your attitude is great, better than you might think!

To bwb, my observation is that the docs are reluctant to emphasize the actual extent of any side effect, and this for a number of reasons.

One of those reasons is that they don't want to cause the suffering that comes from dread (you don't know how bad it will be, so you don't clutter your mind and add to your stress worrying about something you can't prevent anyway)

Another of those reasons is that opening a discussion on the subject is fruitless for most patients anyway (nothing can really be done to prevent it) and that discussion would take a large hunk of time.

Given the load these docs carry already, time is their most precious resource and has to be prioritized and allocated (like all scarce resources). When the consultation with one patient lasts longer than the time allocated, the other patients (all of them) waste more time waiting to see the doc.

But yeah, it's aggravating for sure. It helps to keep things like this in perspective though.

Hang in there! I only had radiation (both sides) and no chemo. I still am not crazy about chocolate anymore, tho my brain wants it badly! Ice cream tastes funky, and I miss frozen yogurt something fierce. A week ago I couldn't eat quesadillas, however two days ago...I could! It was wonderful! They tasted exactly the same! Fruit is just now starting to taste good again too! As it's been said before, of course we are all different, but it took me 7 months to get here. Don't give up hope!

Thank you Bart and Nancy. Hard to know what I'd do without you all.

By dragging myself into the city on the bus today I managed to attend a lecture about oral cancer where I met a fellow patient (Stage 4 and she's only 23 - my heart broke) who said she got her taste back after 6 weeks. While the lecture was on oral hygiene and the dangers of sugars and acids, she gave me the advice to eat whatever I could get down at this stage of proceedings, just as you said, Bart.

Everyone can be different for obvious reasons but my taste and saliva, which I think go hand n hand, returned in spurts. First noticable change at 4 months PT; more at 5 months; biggest improvement at 14 onths and a tad more at 24 months. Frustrating part was my RO's team was telling me everything would be back to normal a few months PT. Are you kidding me? I estimate I'm appx 90% normal.

As soon as I could swallow anything not ensure (two weeks out) I started trying things... Most hurt and tasted LIKE CRAP. It stayed this way for a long time. But I stopped the ensure, found a smoothie mix that wasn't totally heinous and stuck with it, adding mild foods at first to prevent - BURN (hot-spicy, acidic) and overall pain. Soft foods, omelets, potatoes, mild soups, and I worked my way up. I still miss a lot of my sweet. It really is an individual thing.

hugs. Try try try - just don't be afraid to spit it out.

Struggling with the same problem myself Alpaca. I have two problems, one is the difficulty holding weight and the other is the pain in the raw throat. Its causing me a lot more stress than I realised, and the doc put me on a mild anxiety drug for it. She also did a review of my pain meds, and again reinforced that it is more important right now to get calories down than it is to be in a rush to get back to a normal diet. If it means more "thickshakes" then thats how it is, at least until the throat heals. But everything I've read and been told about taste is that it takes months to come back properly, and probably won't come back exactly the same ever again. We just have to be patient and keep things ticking over in the meantime.

As a side note, in my experiments with what food tastes ok, I found a tinned pea and ham soup I liked. I knocked off a 500g tin of it, which is a lot for me right now. Its not very high in calories, but the taste was there (probably because of the way it smells, I tend to taste through smell at the moment). The wife will do a proper pea and ham soup in the slow cooker, and it will have more calories and nutrients than the canned version.

To the both of you, you need to get at least 2500 to 3000 cals in you daily. I found the best way was by drinking Boost VHC which has appx 560 cals in a small 8 oz can. Even when I started to eat solids I would mix a can with whole milk and drink one with every meal. I consumed 3000 cals every day and didn't gain a pound my first year of recovery so that tells me my body was expending a ton of energy recovering. JM2C

Good advice I'll endeavour to follow. Went to a lecture on oral cancer and care of teeth where we were given the fear of God talk and charts about the horrible dangers of sugar and carbonated drinks and fruit juice. So on the one hand, you can taste only sweet stuff and you have to consume mega calories and on the other, your teeth and bones will rot if you allow sugar to pass your lips. Lose, lose situation. My compromise will to continue with my sweet thick shakes, drink them with a straw and follow up with a drink of water. Sooooo hard to keep teeth as clean as I would like because of trismus and discomfort. We're not given fluoride trays here, they were mentioned only in passing and I would have to go to my dentist to get them made up or have fluoride applied to my teeth. Fluoride toothpaste hurts like hell and has for the last few decades for me. If it stings so much, I feel it is not good for my mouth.
BUT some good news. I have started to get SOME taste back after two weeks and three days. Because I was at the hospital for so long yesterday without my trusty powdered Fortisip, I bought a chocolate milk for lunch. It tasted almost nice. The chocolate taste was almost spot on, not just the vague taste I used to get from choc ice cream and sauce. Later I tried some blueberry juice and the same again ... true flavour, although I can't say I actually enjoyed it.
I might get me some pea and ham soup, Oz .... and I wish I had a wife!!!

Try Stannos Floride. My gel didn't sting or burn at all and I used it every night for 5 years post Tx.

well I have minimal sweet taste so that's one up on the cavity prevention charts. That's why my dentist likes me

Funny thing, I've never found any actual taste to Bud* at all.

In fact, I sent a sample off to a lab to see if they could shed any light on the matter.

All I got back from them was a note that my horse has diabetes and I should get him to a vet. And I don't even have a horse.

(rimshot)

* Bud, short for Budweiser, a popular (though God only knows why) American Beer.

Put one of these round sticky punch holes papers on your tongue, place blue food coloring on a cotton swab and dot the inner circle, and your taste buds, papillae, will show. It depends on how many show, I think 40 or more you're a "super taster", and may have sensitve taste, especially during treatment it may be off putting. 15 is a "non taster", have trouble tasting bitter, so chemo, a poison, and reason we taste bitter, may not be as much a problem, and some things taste the same. That's why I don't trust anyone's restaurant recommendations. I'll find out myself lol. .

Yeah, you're 100% correct on that point and I also never trust anyone else's restaurant recommendations (without going there and checking it out first.)

There is also the fact that what appeals greatly to some is apt to gag others.

Asparagus was like that for me, for many years. A good friend loves Vietnamese food, but despite living there for nearly 4 years, I simply can't abide most of it. And I love most chinese cooking, which vietnamese food most closely resembles.

Different strokes...

I was like that with asparagus, mushrooms in my childhood, and love them now. Fish I didn't eat most my life, seafood yes, but did canned tuna, maybe fried flounder or fish and chips on rare occasions. About 10 years ago, I started eating Chilean seabass, monk fish, skate, and developed a like for them, but can't say I would order them at a restaurant, but do cook them at home once in a while. Ironically, I can't eat cooked salmon, tuna, but can eat them raw, and most other sushi, sashimi. The same with coconut. Can it it raw, coconut milk, the jelly, water, but dislike dried coconut, even dried citrus fruit.

Sometimes it's an acquired smell or taste aversions from various reasons, like from cancer treatment. Fish, I understand I choked on a fish bone early on, and didn't eat thereafter. Even tonight, I made a pot of slow cooked red beans with smoked ham hocks. Unfortunately, I vomited from pain meds I'm taking, but the food smell and association made it off putting in my mind, so I threw the whole pot out! During treatment, I didn't want to eat any of my favorite foods, was happy just getting by with canned protein, and didn't have no aversions during or after except garlic. I could not take the smell, which tripled, and even smelled it on all the Heath care workers breath. I would gag especially them putting the mask on, and hold my breath. I'm sure mine wasn't either from all the damage, dry mouth lol.

Texture is another. Just from chemo in 2009, I could not eat potatoes, bread for a few years, and made me gag. It was a texture thing.

Taste is also more than just tasting. It also involves memory, smell, sight, hearing, texture, and taste the 5 taste sensations bitter, sour, sweet, salty, umami, and a 6th one, fat, from mouth feel. Incorporate these, and you will have a different taste experience, even from the ambience, color of the room, plate, etc.

Hey folks, been a while since we last checked in. Richard is a year out, and most things still taste like cardboard, but he mans up and eats because he is hungry, not for taste. He says he remembers that it used to taste good. Yesterday, he actually had 2 sweet rolls stuffed with coconut and I asked him if he could taste the sweet, he said he could taste a little sweet - so there is his progress. Having minimal taste, has not stopped him from eating when he is hungry.
Aloha,
Barbara

Great news, an indication that his recovery is on-track. which is more good news!

i had BOT resection/neck dissection 30 rads and no chemo -rads ended august 7 2013 so i am 10 months out---my taste returned slowly after the first month and is nearly all the way back---acidic foods such as ketchup still sting but i can taste it--carbonation bothers me too so i now drink nitro filled stouts almost exclusively--i was a big IPA drinker and while i can taste it, the carbonation irritates my throat--everyone is obviously different but your taste should come back--my goal is never to drink an ensure or boost shake again

Sounds good, Barbara! I thought the attitude lunch was his and I was amazed at what Richard was eating then realized it was CJ. What a dork I am!

Yep, getting sick of the old baby formula. I'm nearly three weeks out and some taste is returning. Going to try pumpkin soup soon:) However I keep channeling Christine B and drink the milkshakes as well. I've lost more weight since treatment than I did during it. Because I lost some weight before surgery, some after and a little during rads I've changed from a rounded, stocky shape to a taller slimmer profile. Very nice but then I think of what everyone is telling me and force down the shakes.

Alpaca we'll worry about the body shaping later. lol

Tried a can of tinned spaghetti today. The sauce stung a little but it was soft and frankly anything is a break from those damned Resource thickshakes.

Another tip I found works, try a hot drink with the thickshake. Hot chocolate, tea, coffee, whatever. Sip of the shake, sip of the hot drink. Mixes it up a little and doesn't feel like you're swallowing 227ml of phlegm all in one go.

Good point. I tried a beef and tomato cup of soup today - no useful calories but for a taste test and I fancied it. Tasted too strong ans salty but not foul. There's NO sense of enjoyment in anything though although some taste is very reminiscent of normal. Maybe I enjoy the first few mouthfuls of coffee ...

Dairy helps neutralize the acidity of tomato based foods. Have a glass of white or chocolate milk handy when trying foods that could be acidic. Beware of Chinese food too, for me it burned worse than any other food. Eventually I was able to eat won-ton soup. Its basically just broth so hardly any calories in there but its great for keeping you hydrated. You probably have seen this already, but it may help others who read this thread.

List of Easy to East Foods.


PS... Please push yourself to take more in. Losing weight now means you are not taking in enough to heal properly. I know Im the biggest nag about intake and I probably always will be! Im speaking from experience, I struggled and found out the hard way by being hospitalized a couple times for malnutrition and dehydration. I felt so bad I actually thought I was dying and thats what it felt like. Even if you spent your entire life overweight, it could be years before you have properly recovered and rebuilt your body enough to gain weight. Im now almost 7 years post rads and Im still slim after dropping 65 pounds. Its a real struggle to take in enough to maintain myself. When in doubt, take a 3 more bites or sips and then repeat

Your body will be producing a lot of mucus and milk can exacerbate the thickness. Follow it with water and guafenesin if it gets too thick and causes gagging.

As far as milk, it burns some, it did to me, from the lactic acid, sugar. As far as producing more mucus, it really doesn't. Milk has enzymes that replicate saliva, lasts longer than water does, and coats the mouth, which may cause a feeling of thickening of mucus. Speaking of Chinese food, I ate mostly egg drop soup during my last two cancer treatments, which soothed my throat, lessened my mucus, has protein, little carbs for my diabetes, in addition to my canned Glucerna. I guess everyone finds out what works for them, and wasted many foods in search.

Some people that tend to have a flood of mucus when eating hot peppers usually experience the same thing with milk. Not all of them. It's called gustatory rhinitis and is thought to be some form of allergy by one camp; immune reaction by another. I don't believe it increases production as much as thickens or just temporarily changes the viscosity which causes the gag when it trickles down the back of the throat.

Just a clarification of my OP.

Words of wisdom there, Paul.

Survival is always the primary responsibility for those who would survive. We can only offer guidance, we can't do the actual surviving for them.

Some find that a hard and expensive lesson to learn, here you are, showing them the secret handshake already!

Good work . Brother!

Bart

That's good to know. I also have a sinus infection, inflammation show on my last two Pet scans, maybe treatment related, i say, but was never an allergy sufferer, but the past year seems so on occasion. I'll have to see a doctor lol.

Thanks Bart.

I STILL can't do hot food... ACK!

Cheryl, did you eat hot/spicy foods before treatment? Ironically, I never stopped eating very hot food. Vinegar stuff like ketchup and even Ranch dressing are things that still give me fits.

No I wasn't a hot Eater before but I could tolerate some heat - now - my mouth just freaks at a hint of spicy. I'm okay with acidic - vinegary stuff now for the most part, but my mouth still prefers creamy dressings. Hugs

A friend of mine who went through the same chemo and rads four years ago. I asked him recently about how things taste now. He find he uses more seasoning on food than he did before. He likes things spicier and hotter to give them some flavour that he has lost.