I am having difficulty meeting my 2500 calorie minimum. One problem is that nothing I have tried has been palatable because to me it has no taste. Ice cream tastes like chalk, bread tastes like chewed cardboard, etc. It is all so unappetizing that I cannot bring myself to eat it. I love ice cream and milkshakes and could eat/drink those until two weeks ago, but not now. On a whim I even tried childhood favorite, Pixie stix (flavored powdered sugar in a straw) thinking they might be palatable but without any ability to taste sweet flavors they were like sand. I would like to think that the absence of taste would leave things tasting like water, which tastes fine to me and which I have no trouble drinking, but that is not as simple as that unfortunately: I am not left with a neutral taste, but with a distorted, unpleasant, unnatural taste.

Another contributing factor is the mucous, which causes me to have nausea if I have been unable to avoid swallowing it. I also have anorexia, a general loss of appetite probably due to simply feeling so punk from radiation (my treatments just ended yesterday).

I have tried broths, juices, protein powders, about everything I can think of or that the dietician recommended but none of them work for me. I am using anti-nausea meds prn and that does help, as does starting earlier in the day when the mucous is not as much of a problem. I am subsiding on high calorie Boost mixed 50:50 with whole milk, which works, but am having trouble drinking enough because of the issues above. I am lucky in that swallowing pain is not a problem most days. I have found that the colder the solution the easier it is to drink.

The only thing I can think of is just pushing myself to force down much more Boost than I have been the last week (only about 1200 cal/day, way below the 2500 minimum my treatment team wants me to have and the 3500 that would be ideal). So if anyone has other ideas or hints for getting more Boost in, or anything else that might help, that would be great! Thanks.

PS--I am hoping to avoid a feeding tube unless I have no other options.

Hi Ed,

Boy, do I feel for you! I went through nearly a year of almost everything tasting horrible. People would say, "Oh, you mean food has no flavor." No, it tasted BAD! I subsisted mostly on Boost, Carnation Instant Breakfast, and Ensure with other stuff added. My husband just keept adding things until I got enough calories to stop the weight loss. He started with a base of crushed ice in the blender and added the boost or equivalent, then added a couple of the small 3.5 oz. cups of Haagen Dazs ice cream, a 1.5 oz. Benecalorie supplement, protein powder, as well as occasional Belgian chocolate truffles, peanut butter, bananas, etc. The trick for me was to add as many calories as possible into the basic supplement. I'm sure there are many who disagree but my transplant doc, my oncologist, and my gastroenterologist all concurred that it was more important to get sufficient calories than to strive for good nutrition during that period. They told me to eat anything and everything that I could no matter what it was. It worked for me. I hope this helps! (I guess I should add that I had lots of weight to spare but the docs still didn't want me losing.)

Ed,

This period of recovery will not last forever so you have to do what you have to do. You may consider getting a nasal tube. I had one for only 2 weeks and it really helped me.

Karen--you captured it really well: It is not the same as, and is worse than, food simply not having much taste. It sounds like your husband is quite the cook. My concern would be that all those added ingredients would be, to me, in the "tastes bad" category. I literally cannot find anything other than boost that my mouth does not reject. My poor wife has tried everything she can think of and may be getting frustrated that I cannot get myself to drink more boost. So I am going to power through it and, as you suggest, add in all the calories I can (e.g. mixing boost with whole milk). I hope your recovery goes as well as it can.

David--thank you for your thoughts; it's good to hear from people who are further along in recovery, as when you are in the middle of the bad times it's hard to keep a focus on the future being better. Others have suggested that I not fight the nasal tube and found it helpful as you did, so I may end up going that route. May not have a choice if I cannot pound down more oral calories over the next few days!

Ed - you mentioned cold is better. Try freezing the milk or other liquid before blending or add ice cubes. I cried over many a meal, even the shakes, but if I didn't eat, I got really nauseated - a vicious cycle. A lot of times sheer determination was all that made me eat. I had this mental image of skinny cancer patients wasting away to nothing and made my mind up no matter how I go, it will not be from starvation. Anyone who sees me (or knows me) would never expect that to be a problem anyway, ha ha. I'm a foodie. Not being able to enjoy eating drastically cut into social life. As far as my husband being a cook, we're both best at making reservations, lol. I don't know how people with feeding tubes manage. A combination of time and acupuncture fixed my taste problems for the most part. I also do daily acupressure, taught to me be an acupuncturist at NIH. Just in front of your ears, from you forehead to your jawline, gently massage with up and down strokes for one minute morning and night. Just below your lower lip, center, massage with a single finger in circular motion for one minute twice daily. This stimulates the salivary glands which also helps with the taste problems. I was a skeptic but it helped.

Hi Ed, I struggled with similar problems, see my recent post to LynneB in the 'Introduce yourself' threads. I think unless you go through it no one can appreciate how upsetting it to not enjoy food. It is such an important social and culture aspect to our lives. As well as the taste problem it is the unpleasant texture that makes eating difficult. But Davidpa is right, the post treatment phase will end. Although I still can't eat 'normally' yet, I am getting over the psychological problems of not wanting to eat and beginning to enjoy somethings again. I almost feel guilty about enjoying food! It took a while to get my taste of beer back. What a relief when I enjoyed my first pint, I love nice craft beers. But it was a bit like relearning it again. I still can't tolerate wine at all.

Karen, thanks for the acupunture tip. I do rub these area automatically anyway but I will perhaps to it with a better technique now.

Hang on in there both of you. Sally

Hi There Ed
Just a thought on the mucous side of things..be aware that dairy milk can be very mucous producing in my experience. I had a lot of problems with mucous and my treatment ended in July. It's only just easing up a bit now and I'm starting to go into the opposite camp of very dry mouth territory but every now and again it comes back. Nights are still bad for mucous though and as yet I've not been able to lie down at all since about June as otherwise it doesn't drain away.

I've switched to almond and coconut milk but there are many types out there - rice milk, soya etc. I think we have an over reliance on cows milk.

Having said all the above - you may not even be using cows milk or it may never be the trigger for your mucous production! We have similar experiences but it's all so individual. I am learning so much on here as I am sure you will too. Mainly it's the relief of hearing from others who understand and can empathise a bit. I agree with Sally that the whole issue of not being able to eat 'normally' is socially very disruptive, it's unsettling and emotionally charged.

Good luck with getting through the immediate post treatment period Ed as I found that to be the hardest but things alter and change - take care
Lynne

THanks to all who posted in response. I continue to struggle with intake but a recent hospitalization for unrelated complications has helped me catch up and I regained some weight there courtesy of being better hydrated. Something gave me a several day "vacation" from mucous that was much appreciated; doc's thought it might be that I had for the first time used narcotic analgesics and that those may have dried up the mucous, or that the internal blood loss I had experienced might have somehow reduced mucous. Anyhow, I am hoping for the beginnings of relief from it soon as I am now two weeks out from my last rad tx.
Curiously, since my original posting on this issue I have done a reverse in terms of cold fluids being better: now cold hurts my throat and cool is better. This illness and its treatment is certainly full of surprises!

Ed H

It's all a part of this disease. Past 5 yrs and I'm alive thanks to 6 cans of isource a day. Mine goes in via tube but it works. Just ignore the bad tase and go for whatever uou can.