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.