Question about taste changes

TRAD · November 2012

Steve1958 said:
What gets me through..
Traci & Steve,

I also have tonsillar cancer, and am now starting my last week of 35 radiation treatments along with Erbitux (Cetuximab) once a week. I am receiving treatment at MD Anderson in Houston, and am here by myself (my wife and kids are in Orange County, California). I do not have a PEG, but they threatened that if I didn't eat 70 grams of protein a day and drink a ton of water that they would need to. So instead of calories, I focus on protein. I read the back of everything in the grocery store and have found a routine that works for me. I make myself 2 eggs each morning (6g protein each) and sometimes make a cheese omelette (1/4 cup cheese adds another 6g protein). I barely cook the eggs, as they only go down easy when soft. I take little tiny bites and just take my time. I also drink a bottled Starbucks Frappuccino (6g protein). In between or whenever I feel the urge, I eat the little cups of pudding (4g protein each - I like Kozy Shack). Interestingly, the one food I always like is macaroni and cheese, so I always keep some made and in the fridge. I can just nuke it whenever I need it, and 1 cup of mac & cheese has 10g protein. Beyond that, occasionally I find something else that I like - fettuccini Alfredo is still good. And if I van't find enough to fill up my 70g of protein, I drink a Bolthouse Farms 30g protein drink. Both Whole Foods and HEB stores have them in the refrigerated section here in Houston. To me, they have much better flavor than Ensure or Boost, but each person will have a different opinion. And my last filler if I'm in the mood is creme crème brûlée. I scrape off the sugar top and eat the rest. Creamy and good and full of protein. I also like ice cream, but I have to wait until it melts a bit, as the frozen stuff has no flavor against my tongue. I have found that most fruit burns now, so I stick to neutral flavors like vanilla and chocolate. And it's all doctor approved!

The key is to test things until you find what works for you, but there's got to be something that still appeals to you. And one more thing. Going through treatment, there is so much of the time that you're just not hungry, that when you do get an urge, go satisfy it immediately while the iron is hot. Desires leave as quickly as they come.

God bless you. You will get through this.

Regards,
Steve.

Thanks, Steve
That was very helpful, indeed. I'm sorry you are separated from your family during your treatment and I hope that has not been too difficult to manage. I know we all have to do what we have to do but still....

No one before you has quantified the protein intake, although I'm sure it's based on a patient's size/weight. Steve's not using his tube yet - he has it inserted the 1st week of treatment (doc's orders) so that when he needs it, and they assure us he will, it's there and there won't be any disruption in treatment. He goes for daily rad treatments (we are on week 4 of 7) and chemo is once a week every 3 weeks (Cisplatin).

He has been drinking Muscle Milk (he buys) and the Bolthouse (I buy). My mom bought him a bunch of high protein powders to make shakes from Whole Foods and I've bought some too.

He asked me to stop buying him foods/cooking as some of it goes to waste. I tried to hold back the tears but couldn't when i said - that's *ALL* I can do to help at this point.

Anyway, will try the shrimp/macaroni salad someone else suggested and will be sure to keep mac & cheese on hand (though that's not a problem with my 12 yo!).

Thanks and good wishes for your last week.

Traci

hwt · November 2012

TRAD said:
Thanks, Steve
That was very helpful, indeed. I'm sorry you are separated from your family during your treatment and I hope that has not been too difficult to manage. I know we all have to do what we have to do but still....

No one before you has quantified the protein intake, although I'm sure it's based on a patient's size/weight. Steve's not using his tube yet - he has it inserted the 1st week of treatment (doc's orders) so that when he needs it, and they assure us he will, it's there and there won't be any disruption in treatment. He goes for daily rad treatments (we are on week 4 of 7) and chemo is once a week every 3 weeks (Cisplatin).

He has been drinking Muscle Milk (he buys) and the Bolthouse (I buy). My mom bought him a bunch of high protein powders to make shakes from Whole Foods and I've bought some too.

He asked me to stop buying him foods/cooking as some of it goes to waste. I tried to hold back the tears but couldn't when i said - that's *ALL* I can do to help at this point.

Anyway, will try the shrimp/macaroni salad someone else suggested and will be sure to keep mac & cheese on hand (though that's not a problem with my 12 yo!).

Thanks and good wishes for your last week.

Traci

Traci
Through tx I carried a small bottle of swish and swallow and plastic spoon in a baggie in my purse at all times. I guess a man could carry some in a flask but I don't know how that would look in the food court at the mall:-)I found with mashed potatoes and mac & cheese consistency made a difference for me. Eggs and pancakes with lots of syrup seem to work for lots of us. And, if Steve is good with milk, it helps just about everything go down better. I managed rice krispies and milk throughout most of my tx. haven't had a bowl since. Glad to hear Steve is past the halfway mark on the rads.

TRAD · November 2012

TRAD said:
Thanks, Steve
That was very helpful, indeed. I'm sorry you are separated from your family during your treatment and I hope that has not been too difficult to manage. I know we all have to do what we have to do but still....

No one before you has quantified the protein intake, although I'm sure it's based on a patient's size/weight. Steve's not using his tube yet - he has it inserted the 1st week of treatment (doc's orders) so that when he needs it, and they assure us he will, it's there and there won't be any disruption in treatment. He goes for daily rad treatments (we are on week 4 of 7) and chemo is once a week every 3 weeks (Cisplatin).

He has been drinking Muscle Milk (he buys) and the Bolthouse (I buy). My mom bought him a bunch of high protein powders to make shakes from Whole Foods and I've bought some too.

He asked me to stop buying him foods/cooking as some of it goes to waste. I tried to hold back the tears but couldn't when i said - that's *ALL* I can do to help at this point.

Anyway, will try the shrimp/macaroni salad someone else suggested and will be sure to keep mac & cheese on hand (though that's not a problem with my 12 yo!).

Thanks and good wishes for your last week.

Traci

Greens
Thought I'd share this, too.... Steve wasn't getting enough greens since he's struggling to swallow. I found this at our local organic market and he likes the taste.

http://www.cogojuice.com/index.php/products/vegetable_juices/greens_goodness/

Just Greens

Get your five-a-day and then some with this sweet garden-in-a-bottle featuring snappy celery, succulent spinach, juicy cukes, and pinch of parsley. Sip it up and say, “Hey! Good for ME!”

ABOUT TWO LBS OF VEGGIES made this drink:
12 Stalks Celery
1 Whole Cucumber
1 Bunch Spinach
1 Mixed Bunch Kale, Mustard & Collards
1 Garnish Parsley

Traci

CivilMatt · November 2012

food for thought
Traci,

At my worst, I could not stand to eat anything, the taste, no taste, awful texture was overwhelming. People kept giving me food to eat and I kept telling them I could not and would not eat, 99% of all food was disgusting. It is extremely hard for people outside of the H&N forum to understand the food dilemma. I moved on to smoothies exclusively for months and thought that was the “new me”, but it is now getting better. Food texture is now a welcome partner at the table and taste is at the front door. While it is getting better for me, but it might get much worse for him (temporarily).

Best,

Matt

I am 56 years old and met my wife in First Grade.

Skiffin16 · November 2012

CivilMatt said:
food for thought
Traci,

At my worst, I could not stand to eat anything, the taste, no taste, awful texture was overwhelming. People kept giving me food to eat and I kept telling them I could not and would not eat, 99% of all food was disgusting. It is extremely hard for people outside of the H&N forum to understand the food dilemma. I moved on to smoothies exclusively for months and thought that was the “new me”, but it is now getting better. Food texture is now a welcome partner at the table and taste is at the front door. While it is getting better for me, but it might get much worse for him (temporarily).

Best,

Matt

I am 56 years old and met my wife in First Grade.

How Old...
What grade are you in now, LOL....

JG

ac_scott · November 2012

Wow - Now I know
Had TX 11 of 35 this morning. Pancakes an sausage for b'fast, choco milk on the bus ride home, no problem with taste,..........until I walked in the office and made a cup of coffee, warm and wet is the only description I can give, had to double check and see if I actually put coffee and sugar in the cup. I thought the loss would be gradual, granted taste has slowly been decreasing, but to go all a once was a shock. It's really kind of cruel, they want us to keep our calorie count up, so we dream about consuming every fattening thing in reach. Then the taste goes away and we get no pleasure from the indulgences, just not fair. Oh well, the good thing to know is, Tx will be over eventually, taste will return, and life will return to normal.

ekdennie · November 2012

a couple of ideas
I was diagnosed with a salivary gland cancer (MEC) two years ago at the age of 31. I had surgery and 30 rounds of radiation and I completed treatment about 2 years ago...seems like yesterday. some tastes and textures take a while to come back. I found that for me it helped to think of my tastebuds as being newborn. my old ones had all be kicked out and I now had brand new ones. I introduced foods like you would for an infant. a lot of variety, but in very small amounts. my foods were heavy in dairy as it was one of the first tastes that came back and didn't taste bad. i enjoyed alfredo sauce (minus the pepper) on very overcooked pasta. I still order my food with extra sauce to help me swallow it. some of the foods I liked before I don't like as much, but some that i hated I love! the hard part is being patient enough to know that the taste buds will come back and there is hope. I found that for the first two months chocolate tasted like cocoa powder. fruit tasted either dirty or just wrong. meat would have a very strong flavor. when I was ready for meat, I had to make a couple of changes. 1. I have to eat a fattier cut than I did before. 2. I have to cook it med rare, not med well. 3. I have to eat it as soon as it is cool enough to get down...if I wait too long it is too hard to get down. 4. i also seasoned my first steak with salt, onion powder, and garlic powder. no pepper. pepper was added to my food about three weeks after my sores were all healed up. I also liked the high protein boost. I still drink it on occasion when i need the calories.
I don't know if he likes coffee, but I found it to be very overpowering, so if i went out i would order my coffee (from starbucks) as a 130 degree single shot grande latte. that way it would be cool enough so I could drink it right away and not so strong that it bothered me. it helped me feel normal to be able to have a coffee from time to time.
best of luck! I hope his taste buds turn to normal quickly! huge hugs!
e

ekdennie · November 2012

ekdennie said:
a couple of ideas
I was diagnosed with a salivary gland cancer (MEC) two years ago at the age of 31. I had surgery and 30 rounds of radiation and I completed treatment about 2 years ago...seems like yesterday. some tastes and textures take a while to come back. I found that for me it helped to think of my tastebuds as being newborn. my old ones had all be kicked out and I now had brand new ones. I introduced foods like you would for an infant. a lot of variety, but in very small amounts. my foods were heavy in dairy as it was one of the first tastes that came back and didn't taste bad. i enjoyed alfredo sauce (minus the pepper) on very overcooked pasta. I still order my food with extra sauce to help me swallow it. some of the foods I liked before I don't like as much, but some that i hated I love! the hard part is being patient enough to know that the taste buds will come back and there is hope. I found that for the first two months chocolate tasted like cocoa powder. fruit tasted either dirty or just wrong. meat would have a very strong flavor. when I was ready for meat, I had to make a couple of changes. 1. I have to eat a fattier cut than I did before. 2. I have to cook it med rare, not med well. 3. I have to eat it as soon as it is cool enough to get down...if I wait too long it is too hard to get down. 4. i also seasoned my first steak with salt, onion powder, and garlic powder. no pepper. pepper was added to my food about three weeks after my sores were all healed up. I also liked the high protein boost. I still drink it on occasion when i need the calories.
I don't know if he likes coffee, but I found it to be very overpowering, so if i went out i would order my coffee (from starbucks) as a 130 degree single shot grande latte. that way it would be cool enough so I could drink it right away and not so strong that it bothered me. it helped me feel normal to be able to have a coffee from time to time.
best of luck! I hope his taste buds turn to normal quickly! huge hugs!
e

oh, I forgot
I almost forgot to mention that stouffer's swedish meatballs saved me. after about two months post treatment I ate them with a boost for at least one meal a day. they were the right texture, didn't taste too horrible, and because of the creamy sauce were okay going down. keep making food for him. it is what you can do and it is what makes you feel needed. just make something that can be frozen. he will have ups and downs...it is just part of the healing. just remember that if he had just finished surgery he would have 6-8 weeks of recovery from that. radiation is the same...6-8 weeks of healing just from the radiation and the resulting sores. then you have damaged taste buds. we live in a society in which every big social occasion involves food. we celebrate with it, we talk about it all the time, we talk about how much some one weighs, what fad diet people are on, what new "miracle" food will help you live longer. but then when you have H&N radiation treatments foods that used to taste amazing taste horrible. you lose that wonderful contented feeling that you had before when you would eat your favorite foods. it can be very depressing, but it doesn't have to be! this is just one more battle that you are fighting together! you both have a choice...you can let cancer win this or you can fight back. i am a fighter and I can tell you that I ate a lot of foods to find something that could get down and that didn't taste bad. if it tasted bad one day I would wait a couple of days and try again. I still remember on a day when I didn't want to eat anything. I didn't even want to drink water, my mom came by my bed and looked me in the eye and said to me, "you have a choice, you can fight and eat something or I will put you in the car and take you to the hospital and make them find a way to get you to eat. you have children to care for and you can't do that if you don't eat. so I am getting the keys or and I getting a glass of milk?" I drank that milk even though it had no taste. I drank every cup of milk she placed in front of me.
hugs to you. as the caregiver you have the roughest time of it. he had the cancer and the treatment, but you had to watch and there wasn't much you could do to help. hugs and best wishes!
e

Question about taste changes

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