Hello Everyone,

My hubby is now in his third week of radiation and has had two (going on three) Erbitux treatments. He says that everything tastes terrible to him now, and he can't seem to find any foods that appeal to him. Does the loss of taste continue from here on out until the end of treatment, or have any of you found that there were certain things that tasted better to you than others? (As you progressed through your treatment)

Any ideas you can share will be appreciated... Roy is really struggling with this right now...

Thanks,

Laurie

Laurie,

I'm afraid the loss of taste continues not only from now until the end of treatment but for many patients, years and years beyond. I'm almost 2-years out, and many foods have no flavor or will have flavor for a couple of bites and then nothing.

As far as finding things that taste good, for me that changed almost daily. I did enjoy smoothies made with vanilla soy milk (I'm lactose intolerant, so no dairy) and bananas until I couldn't swallow anymore, but everyone here seems to report different results.

And yea, it sucks.

- Margaret

Laurie,

I tried to tell Roy when I was chatting with him the other day that there's not much that will taste good and it can last for a long time after treatment. For some it was a few months...others years.

I started to regain some tastes about 2 months after treatment...but couldn't do acidic stuff (tomato base or pepper) until almost 2 years out. I found that the sweets came back quick for me.

I hope you guys are taking care of each other, we are here to help however we can my dear!

(ps thanks for the coffee!!! You rock!)

Eric

Laurie,

I doubt he will find ANYTHING that will taste good for perhaps 4 to 5 months from now. The important thing now is to concentrate on getting the calories (I recommend 3000 per day) down his throat anyway he can. I found it easiest to pour 6 cans of VHC down my tasteless increasing sore throat. Also don't forget the water. I was told 48 ozs each and every day.

I drank Yoo-hoo throughout my treatments. It felt soothing to my sore mouth and throat. While I did not taste the full flavor, I was still able to taste it a little bit. But this will be different for everyone. Especially since first we are all different. Second, everyone going thru rad. has a slightly different area being radiated. Mine was concentrated on the left cheek and behind the top rear tooth. My right side was spared as much as the docs could so maybe thats why my taste wsnt totally compromised.

Another thing that wasnt too bad was canned sliced peaches. They slide right down without much chewing.

Like David recomends, push the calories. If he doesnt keep up with the calories, it will begin a viscious cycle where he wont feel well and then wont eat. He needs 3000 calories per day to help his body fight the effects of treatment.

How about milkshakes? I used to drink a chocolate peanut butter milkshake that was very high calorie.

Here's the recipie...

3 cups chocolate ice cream
1.5 cups of milk
2 tablespoon smooth peanut butter
1 scoop dry Carnation Instant Breakfast Powder
2 tablespoon chocolate syrup

You can play around a little with the measurements to make it thicker or smoother. This has about 1300 calories in it.

Best of luck

The only thing I have found that tastes good beyond the 1st bite is French toast with extra vanilla added to it. One bite taste is the norm for me.

Here's one I've been using for Gordon (who is pre-diabetic and may also be lactose intolerant) since around the middle of week 4 - when he had to give up his beloved oatmeal:

1 Boost.
1 cup of fortified milk (4 parts whole milk and 1 part skim milk powder all mixed together. I doctor his milk with 15 lactaid drops per litre of milk and you have to add an extra 15 drops per cup of skim milk powder).
2 TB of whey protein powder.
1 Boost
2 scoops of ice-cream (I use Chapman's, because they make a "no-sugar added" variety that is also lactose-free. Breyer's has a "no-sugar added"
ice-cream, but it isn't lactose free).
Fresh fruit - usually strawberries, mango, papaya, frozen blueberries, or canned peaches. Bananas don't work as they sting his tongue. You have to play around with the fruit a bit to see what works.

I stick the plastic juice jar with the shake into the freezer for a couple of minutes and then into the fridge. It seems to be easier to get down if it's really cold.

We showed this recipe to both the nutritionist and the doctor and they thought it was fine (for its purpose).

Unfortunately we can't use yogurt any more because something in it stings his tongue. The soy yogurt tastes weird (to him), so we might try Greek yogurt which is creamier and may not be so sour. Silken tofu has been suggested as something else to blend into the shakes.

He gets these shakes 4 times per day. If he can get a "no-sugar added" pudding down or an extra glass of fortified milk, then so much the better, but this is happening less and less. He's now within a day of finishing week 5. He doesn't like the shakes particularly, but they're all we've got at this point, and he's trying to get them down for me. He drinks very, very slowly.

He still hasn't lost weight - was 79 point something kg. last week and up to 80 point something kg. at the beginning of this week, so we are holding our own.

Hope this recipe is of some help to those with special dietary needs.
Anne

Just wanted to say thank you to everyone for the help... We tried many different foods, but it was the oatmeal with brown sugar that ended up tasting the best to him.

Unfortunately, his mouth is so sore now that we have switched to the PEG. He seems to be doing fine with it, but he feels full quite quickly and for several hours following. I'm having trouble getting enough calories into him. I think I better get the VHC as David suggested.

Thanks again everyone! This forum is such a gift!

PS: Your welcome for the coffee, Eric!

Laurie

If you go to the main forum page, there is a link for Amazon. If you go thru Amazon USING THAT SPECIFIC LINK TO THEM, OCF gets a small donation from Amazon that costs yo nothing. I just ordered 2 cases of Carnation VHC for $84 from RxUSA Wholesale Inc. They are very fast, I ordered it Monday morning and got it today.

Has your doc ordered specific PEG formula? Do you use the pump? If you have one, that will make a huge difference in how yoru husband feels after 'eating'. I do mine overnight which makes my daytime easier. You can set the pump to run at a slow speed and it will help with the fullness feeling. I use prescription formula and mix it with Carnation VHC, plus I add a can of water per can of formula.

Try to encourage your husband to keep swallowing. Drinking water is very important. It will keep his swallowing muscles working and will keep him hydrated. Shoot for 48oz daily, more is even better.

If you dont already have it, ask the doc for magic mouthwash. He can swish it around in his mouth and spit it out before eating. It helps to soothe the mouth and numbs it alittle so he can eat more easily.

Best of luck with everything

Laurie, you're getting the best advice possible from everyone here. My experience is much like the rest, although I didn't have a PEG and just forced myself to drink using viscous lidocaine to numb the area as much as possible.

As far as taste, yeah, I can empathize. I too found that sweet things were about all I could tolerate for awhile, maybe for 2-3 months after the end of rads. But it does gradually come back. I began with the blandest, softest stuff I could find - soft boiled eggs, vegetable soup, thin oatmeal. After 10 months I'm still not much interested in spicy things, tomatoes, sushi and a few other goodies I used to love. Part of that is the radiation-induced acid reflux, part the loss of sensation on the left side of my tongue, part the narrowed throat and part who knows what else. But since everything else has returned I don't see why all my desire for food won't eventually.

I'm sorry Roy is struggling, but you should both know that things will improve! He's lucky to have someone like you to take care of him.

I send my best courage to you both. Please keep us informed!

David 2

Oh thank you so much David and Christine! It is so wonderful to have you (and this forum) as a resource.

Things have changed fairly rapidly around here in the last 2 days. Roy became really fussy about using the PEG and also wouldn't eat or drink anything, so he basically began to dehydrate and starve himself. I got extremely upset and called both the MO's office and the dietician that we were referred to because I could see that he was feeling very sick, and he wouldn't listen to any of my pleading.

Thankfully, he was seen by the dietician today, and she got him all straightened out. She recommeded a gravity feed with Osmolite, 6 cans a day. She also told him he needed 64oz of water a day as well, and gave him the reasons why. (Which I had previously explained to him) For some reason, he listened to her and became compliant. So after allowing us to feed and hydrate him, he is feeling much, much better! Yay! It seems that using the bag instead of the bolus is a lot more comfortable for him.

I can't tell you how relieved I am. Bless his heart, I don't know why he had to make this so difficult!

Thanks again for being there... It makes such a difference.

Great news, Laurie!

Laurie, Im so glad your husband finally listened and is helping himself by keeping the fluids and nutrition up. I was in that same cycle a couple times and ended up being hospitalized. Keep up the good work with this. Being a caregiver is a rough job, hang in there

Isn't it strange that a spouse knows nothing? Then someone else says the same thing and it becomes the gospel. You are doing a great job. One day he will thank you and maybe even appologize for being a hard head.