Hi All,
My husband just completed his treatment: 35 radiation treatments and 3 chemos (beginning, middle and end). He only ended last week and is already impatient and wondering when some taste buds might start to come back. He looks longingly at my food and I feel guilty eating in front of him.

The doc said that over the first 6 months they come back in a "burst" and then they slow down and then after a year, another "burst". Does that make sense to any of you?

I know that it is different for everyone but is there an average time?

EllenB

I'm five weeks out and can taste again. It's not like before and I can't taste all things and some taste different but it is great being able to taste anything:) each day will be different and it will get better.
I know how your hubby feels it makes such a difference even wanting to eat when it all tastes yuk.
Jayne x

Thanks Jayne. That is encouraging. I will keep this thought.

When most of us begin to taste again it may only be for the first bite and as time progresses and as our saliva increases so does our taste. For me personally I didn't notice a taste improvement until my 4th month post Tx, then again at 5 months, then the biggest improvement came at 14 months and another small one came at 24 months. I suspect that my taste and saliva improvements were actually steady but that's how I perceived my changes. For some reason I never lost my sweet taste during Tx even though sweets were void in my pre Tx life. Today, 5 years out, my ability to taste sweet is my strongest. Even unsweetened Cuban coffee tastes sweet! lol I estimate that I am 90 to 95% back to normal but that's really hard to estimate as we soon forget what normal was. Anyway I'm totally happy with my taste and saliva considering what my throat was subjected to.

Word to both of you...we are all anxious to reclaim our life after Tx ends but for the overwhelming majority our recovery can take every bit of 2 years to fully reach what our new normal will be so please be patient. We have never found anything that accelerates or even improves this recovery process other than rest, hydration, plenty of calories and time so again both of you just be patient and see how it goes.

As a caregiver, it is important to remember that we CAN'T provide something that 'tastes like it should' in the early stages of healing, try as we might. Before his taste buds started coming back (about 2 months post TX)I just worried about nutrition and not taste. As taste returned, it got more complicated, and protein shakes with some fruit became the new standard.

My husband is now 5 months out of treatment, and fruit and some vegetables taste the closest to 'right'. Today, consistency and swallow-ability is more of an issue than taste (but NO CAPCASIN!!!).I have had some truly epic failures in cooking for him, but it's important to keep trying different things - the ever-popular protein shake is always a backup.

One other tip - for my husband, at least, natural flavors taste best: natural vanilla is better than fake, real bananas are yummy but the fake banana flavor in pudding mixes tastes dreadful to him.

Thanks everyone. I will try to help my husband to be patient. I know that if I tell him what all of you have said, he might not want to hear it now. Sometimes he needs to hear it from his doctors. So I will feed (no pun intended) the information in little bits. I have tried to encourage some food intake but eggs seem to be the only thing that pleases him now.

I think that perhaps ice cream or something sweet might work as a first try. Also some of the other suggestions. I would like to make a shake with fruit and protein but he has to be willing to try it. I am trying and will sometimes fail. I know that. It is very hard.

Peach Shake:
5 slices canned peaches (get the kind with only water, sugar and peaches - Del Monte Lite makes some)
1 cup french vanilla ice cream
1-2 cups milk (dairy, soy or rice)
1 packet Carnation Breakfast Essentials, Vanilla

This was what got us through the worst of the worst.

As he got better, I added:
More peaches
Benefiber
Whey powder (with natural vanilla)

Oatmeal Shake:

I got this idea from a posting on this site. Here is my version:

1 cup prepared Oatmeal: (I get Quaker 1 minute oatmeal, and simmer 2 cups of it with 4 cups of milk for about 10 minutes. This makes it less scratchy.)
2 small or 1 large VERY ripe bananas (or other fruit)
1 Packet Carnation Breakfast Essentials (vanilla)
1-2 cups milk (dairy, or mix of dairy and rice, soy, or almond)
Honey (if the bananas weren't all that ripe)

Note - both of the above also taste good to people that haven't had therapy - so you could make and share it with him. Make it thin at first, and be careful with amount of fruit because of the acidity. Good luck!

Thanks Maria. When he feels ready I will try. Right now we are doing good with calorie intake thanks to the Carnation high caloric, Ensure and eggs. I would like to help with variety but he has to be willing to take the risk. I will copy these down on my list.

HI Ellen

Already, your husband is ahead of the game because he wants to eat. Alex still struggles with motivation and only over the past 3 months or so has he genuinely expressed desire to eat. He has chewing and swallowing issues as well as continuing taste disturbances and we are 12 months out from treatment.

Alex is very sensitive to temperature and avoids both hot and cold. He also cannot tolerate spicy. I nearly killed him the other week with a Thai Curry - completely forgetting his issues. Like David, he has a better chance of tasting and enjoying sweet things. He has also developed aversions to certain flavours (most notably, vanilla) which remind him of when he was sick.

I think Alex's has taken longer than most in this part of recovery for numerous reasons including time he was on treatment which was longer than many, the size and position of his tumour which has caused permanent nerve damage and mobility problems with throat and tongue as well as the fact that he was a skinny bugger before and not too interested in eating anyway.

Also, I don't feel guilty for eating in front of him, as I feel it might motivate him to try a little bit for himself if he is jealous of me.

There are still a lot of things that I can't taste even after two years, and some things that I can taste just don't taste good. I used to love dark chocolate, but that doesn't taste good to me anymore. Coffee was one of the first things I was able to taste again, and I have always loved coffee, so that's good. I just don't enjoy eating much. I eat because I know that I have to eat. I make a milkshake everyday with a bottle of Ensure Plus (Kroger makes a similar one called Fortify that is quite a bit cheaper.), a scoop of ice cream and a banana. Sometimes I use another fruit like stawberries or peaches when they are in season. Eggs work, as do custards, and some seafood.

Ellen,

I might be a "worse case" scenario for you but then no one should sugar coat the matter. I was 59 when diagnosed and am told that being on the older side of life it could have had more of an impact with my taste buds. I will have to be honest though to say that it wasn't until after at least 3 years before mine were back to perhaps 90% normal. There are some foods/tastes that to this day, just over 5 years, that still do not taste like they used to and probably never will be at this point in time. Two things in particular, chocolate and most alcoholic beverages, seem to be the hold outs. I never was much of a drinker anyway so that didn't bother me but I sure miss the true flavor of chocolate. It's also odd that chocolate was probably the very first thing I noticed to change in flavor in my early stages of Tx, maybe just into the 2nd week. I was forever thankful that my favorite beverage, coffee, was never really ruined even temporarily to speak of.

I hope that doesn't dim your spirits but feel that I should share my personal experience for what it's worth.

Good luck,

Bill Dozier