New to the site & needing advice

thejollyfam
thejollyfam Member Posts: 5
Hello all,

New member here! My father was recently diagnosed with NHL-diffused large B cell. He's had 2 treatments of R-CHOP, so far with few side effects. The one that has been the most bothersome is the taste change, not so much with food, but with what he drinks. Its the normal metallic taste that goes along with alot of chemo drugs. Water & sweet tea seem to be the worst. I'm interested in hearing what worked for some who experienced or are experiencing the same thing. I'm (and he is too) open to anything and every kind of idea anyone would have. He has the zinc sulfate tablets from the MD to help with the taste but so far, it doesn't seem to be working. As his daughter, I just want to fix it & want him to experience as few side effects as possible (if thats even possible). I'm just looking for ideas for things that have worked and maybe some support too. I'm also an oncology nurse who never thought that my work would be at home. Its been a difficult thing to work & take care of patients and have one at home. Although, I do have a new perspective of what patients and families are going through. I have felt so heartbroken during all of this even thought I have done my best to give advice & to be strong for my father, encouraging him and going with him to his treatments and appointments. Its been difficult to play the nurse and the daughter. I'm at the point now where I'm in my daughter role and just want him to be able to taste normally again. Thanks for listening and for any advice you may have!

Comments

  • allmost60
    allmost60 Member Posts: 3,178
    Chemocare.com
    Hi,
    I found this information at Chemocare.com. I copied and pasted it below for you. I have not experienced any problems with my taste buds, but my chemo treatment is CVP-R...not R-CHOP. From information shared with me, it appears R-CHOP is a harsher chemo cocktail than the CVP-R. Maybe that has something to do with me not having any problems. I've had 5 of 6 treatments and would think if I was going to have this problem, it would have happened by now. I'm sorry your father is going through this, but he is very fortunate to have a daughter like you, and an Oncology nurse to boot. All of the chemo nurses at my clinic are just wonderful and very caring. I'll keep your father in my prayers.
    Love..Sue..
    Follicular NHL/grade2/typeA/stage3(no bone involvement)diagnosed on 6/10/10
    -------------------------------------------------------------
    Chemocare.com
    Taste Changes during chemo:
    There are 4 main types of taste: Sweet, sour, bitter, and salt. Sense of taste is primarily located on the tongue. Each type of taste is located within taste buds on different sections of the tongue. As you chew your food, it mixes with saliva and as it comes in contact with the taste buds, messages are sent to the brain regarding your sense of taste. The brain processes the messages and helps you identify different tastes.

    What are taste changes?

    •Taste changes are common during chemotherapy. The exact reason for taste changes is not clear, although it is thought that it is a result of the damage to the cells in the oral cavity, which are especially sensitive to chemotherapy.
    •About 50% of patients getting chemotherapy experience taste changes.
    •Drugs most commonly associated with taste changes include carboplatin, cisplatin, cyclophosphamide, dacarbazine, dactinomycin, doxorubicin, 5-fluorouracil, levamisole, mechlorethamine, methotrexate, paclitaxel, and vincristine.
    •Most people report taste changes involving a lower threshold for bitter tastes and a higher threshold for sweet tastes.
    •Some drugs also produce a metal taste during the actual intravenous infusion. These include nitrogen mustard, vincristine, cisplatin, and cyclophosphamide.
    •In addition, the association between taste of food and chemotheraphy may lead to taste changes. Chemotherapy loss of sense of taste can occur purely from the association of an experience of nausea and vomiting with chemotherapy.
    •Taste changes may occur during therapy and last for hours, days, weeks, or even months after chemotherapy.
    •Taste changes are also common in people taking biologic therapies such as interleukin-2, and interferons. Most people report taste changes involving a decreased threshold for spicy foods, describing most food as bland, bitter, like chemicals or medicine. Both the cause and duration of taste changes associated with biologic therapy is unclear.
    Things you can do to manage taste changes:

    •Maintain good oral hygiene - brush your teeth before and after each meal.
    •Choose and prepare foods that look and smell good to you.
    •Eat small, frequent meals.
    •Do not eat 1-2 hours before chemotherapy and up to 3 hours after therapy.
    •Use plastic utensils if food tastes like metal.
    •Eat mints (or sugar-free mints), chew gum (or sugar-free gum) or chew ice to mask the bitter or metallic taste.
    •Substitute poultry, eggs, fish, peanut butter, beans and dairy products for red meats.
    •Marinate meats in sweet fruit juices, wines, salad dressing, barbeque sauce, or sweet and sour sauces.
    •Flavor foods with herbs, spices, sugar, lemon, and tasty sauces.
    •Chilled or frozen food may be more acceptable than warm or hot food.
    •Try tart foods such as oranges or lemonade (this may be painful if mouth sores are present).
    •Avoid cigarette smoking.
    •Eliminate bad odors.
    •Eat in pleasant surroundings to better manage taste changes.
    •Increase your fluid intake.
    There is no one magic solution for taste changes that suits everyone. Finding foods that taste appealing may be a process of trial and error. Some people who experience taste changes avoid their favorite foods to prevent the possibility of spoiling them for the future.

    There are no medications that address taste changes. However, some studies have suggested that deficiencies in zinc, copper, nickel, niacin and vitamin A may contribute to taste changes. Do not take more than 100% of the recommended daily allowance. Remember, you should discuss taking vitamins or any other "remedies" with your doctor before you begin.

    When to call your health care provider about taste changes:

    •If your taste changes have caused you to stop eating and you have lost 5 or more pounds, you should inform your health care provider.
    Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website about taste changes and other medical conditions is meant to be helpful and educational, but is not a substitute for medical advice.
  • KC13167
    KC13167 Member Posts: 215
    Beverages
    My last R-CHOP was 10/06/2010 and my taste buds are still off. I've found that very cold, semi-frozen beverages work best for me: bottled water with lots of lemon or juice. Before my CA diagnosis, I was a Diet Coke addict. I haven't been able to enjoy a Diet Coke due to the carbonation and I really miss it. Don't forget that there's always room for Jello! As you know, it counts as a liquid too. Good luck. Kellie
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    KC13167 said:

    Beverages
    My last R-CHOP was 10/06/2010 and my taste buds are still off. I've found that very cold, semi-frozen beverages work best for me: bottled water with lots of lemon or juice. Before my CA diagnosis, I was a Diet Coke addict. I haven't been able to enjoy a Diet Coke due to the carbonation and I really miss it. Don't forget that there's always room for Jello! As you know, it counts as a liquid too. Good luck. Kellie

    Taste Buds
    Kellie,
    My taste buds were so far off I could not even taste mustard WHILE ON CHEMO. Now thats some weird stuff. John (FNHL-1-4A-5/10)
  • allmost60
    allmost60 Member Posts: 3,178
    COBRA666 said:

    Taste Buds
    Kellie,
    My taste buds were so far off I could not even taste mustard WHILE ON CHEMO. Now thats some weird stuff. John (FNHL-1-4A-5/10)

    Weird huh?
    Hi John,
    It's kind of weird how some people have a re-action and others don't. You and I both had the same chemo..CVP-R and yet my taste buds are as good as ever. The only time I experience anything weird in my mouth is on the Sunday (day after) I stop taking the pred. Cold drinks, ice cream, etc cause my teeth and jaw to really hurt. It gets better as each day passes, but for about a week after the pred I have some weird body experiences. Always get a sore throat and my neck feels swollen, knees hurt, and my joints feel like someone used a hammer on me. I usually get 3 days out of the 21 day cycle where I don't feel like total crap...just in time to go back in and start the whole process all over again...ha!
    Love...Sue (FNHL-2-3A-6/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    allmost60 said:

    Weird huh?
    Hi John,
    It's kind of weird how some people have a re-action and others don't. You and I both had the same chemo..CVP-R and yet my taste buds are as good as ever. The only time I experience anything weird in my mouth is on the Sunday (day after) I stop taking the pred. Cold drinks, ice cream, etc cause my teeth and jaw to really hurt. It gets better as each day passes, but for about a week after the pred I have some weird body experiences. Always get a sore throat and my neck feels swollen, knees hurt, and my joints feel like someone used a hammer on me. I usually get 3 days out of the 21 day cycle where I don't feel like total crap...just in time to go back in and start the whole process all over again...ha!
    Love...Sue (FNHL-2-3A-6/10)

    Weirder Yet
    Sue,
    It was awful when the taste buds went. Everything I ate tasted like metal. Sugar tasted salty. I am 2 month out now and still can't stand the taste of whole wheat bread. It leaves a real bad taste in my mouth. Of course I don't eat it anymore. The good news is everything else is back to normal taste. Mustard of course still taste like it used too.
    Since you are so close to the end of treatments you may be able to pull your hair back and start to notice little fuzzy stubbles starting to come thru. They may be white,gray,brown or black in color. I started to notice it just before my last treatment. The thing is they grow really slow,at least for me anyway. It gives you something else to look forward too. Anyway, just keep taking it easy. Remember you are practically running on empty for a while. John(FNHL-1-4A-5/10)
  • tcvine
    tcvine Member Posts: 174
    Jolly Taster
    Hi Y'All,

    Let me tell you my story about taste.

    For 20+ years now I have been a lover of wine. My first try at it was in the Alsace area of France, in a small town where I was invited to a coworker's home to sample the family wine. I've never looked back. In fact, my wife and I designed a small wine cellar into our retirement home that we built several years ago. The only other thing I used to drink was margaritas.

    Right out of the gate, very first chemo infusion, my taste went to hell. I didn't even try drinking a glass of wine until after my 3rd infusion because of the cancer involvement in my liver, but my onc said that I could have a glass once in a while. So then I tried it. TASTED TERRIBLE!!!!!! So now, if my taste doesn't come back, I've got some wine I can sell. (Some of it is really good bordeaux wine) -- so sad.

    But you know what DOES taste good - frozen margarita swirls! I think it is because they are cold and pretty much on the sweet side. I also was a diet cokeaholic - but it really doesn't taste good any more. It's not sweet enough.

    The other thing that I've lost is spicy foods. I've always been a lover of red pepper in my italian food and jalapeno in my Mexican food. And a lot of both. Now I also cannot stand the spice. First time I tried, I thought my mouth would never stop burning.

    Now that I'm done with my R-CHOP (I also have diffuse, large B-cell aggressive) I can only hope that my taste comes back. The food we enjoy is a surprisingly important part of our lives, i think. Not good.

    To Jolly's point for your Dad, what I did was just keep trying everything until I found a few things that worked for me. The best soft drink for me has been diet Mountain Dew. Crystal Lite lemonade also works pretty well, and I still can drink coffee in the morning. But it is not always consistent.

    You are doing so well by your Dad and, speaking as an old guy Dad, that is what really counts.

    Best of luck and please keep us posted.
    Tom (DLBCL-4-7/10)
  • thejollyfam
    thejollyfam Member Posts: 5
    tcvine said:

    Jolly Taster
    Hi Y'All,

    Let me tell you my story about taste.

    For 20+ years now I have been a lover of wine. My first try at it was in the Alsace area of France, in a small town where I was invited to a coworker's home to sample the family wine. I've never looked back. In fact, my wife and I designed a small wine cellar into our retirement home that we built several years ago. The only other thing I used to drink was margaritas.

    Right out of the gate, very first chemo infusion, my taste went to hell. I didn't even try drinking a glass of wine until after my 3rd infusion because of the cancer involvement in my liver, but my onc said that I could have a glass once in a while. So then I tried it. TASTED TERRIBLE!!!!!! So now, if my taste doesn't come back, I've got some wine I can sell. (Some of it is really good bordeaux wine) -- so sad.

    But you know what DOES taste good - frozen margarita swirls! I think it is because they are cold and pretty much on the sweet side. I also was a diet cokeaholic - but it really doesn't taste good any more. It's not sweet enough.

    The other thing that I've lost is spicy foods. I've always been a lover of red pepper in my italian food and jalapeno in my Mexican food. And a lot of both. Now I also cannot stand the spice. First time I tried, I thought my mouth would never stop burning.

    Now that I'm done with my R-CHOP (I also have diffuse, large B-cell aggressive) I can only hope that my taste comes back. The food we enjoy is a surprisingly important part of our lives, i think. Not good.

    To Jolly's point for your Dad, what I did was just keep trying everything until I found a few things that worked for me. The best soft drink for me has been diet Mountain Dew. Crystal Lite lemonade also works pretty well, and I still can drink coffee in the morning. But it is not always consistent.

    You are doing so well by your Dad and, speaking as an old guy Dad, that is what really counts.

    Best of luck and please keep us posted.
    Tom (DLBCL-4-7/10)

    Hey Y'all!
    thanks for all

    Hey Y'all!

    thanks for all the ideas about the foods and drinks! We've already put some of them into practice. Good luck to all of you during your treatments and lots of prayers to you!

    Tom-I've been reading back some discussion topics from earlier in the fall about when you had your interim testing. Did the MD do a pet or ct to see if the chemo was working? & I have another strange question! My dads voice acts up after chemo treatments, like clearing his throat etc. Have you had a side effect like that?

    Whitney
  • COBRA666
    COBRA666 Member Posts: 2,401 Member

    Hey Y'all!
    thanks for all

    Hey Y'all!

    thanks for all the ideas about the foods and drinks! We've already put some of them into practice. Good luck to all of you during your treatments and lots of prayers to you!

    Tom-I've been reading back some discussion topics from earlier in the fall about when you had your interim testing. Did the MD do a pet or ct to see if the chemo was working? & I have another strange question! My dads voice acts up after chemo treatments, like clearing his throat etc. Have you had a side effect like that?

    Whitney

    WEIRD TASTE
    Whitney,
    I wonder sometimes if the weird taste is caused by the prednisone and not the chemo. I know prednisone is part of the cocktail,but when I say chemo I am talking about those other ones that are in the R-CVP AND R-CHOP. Again,I know the prednisone is the P in the cocktail.but it is the one we take by mouth and actually passes over our tongue. Prednisone has been around for a long time ,but the usual dosage is small compared to the mega doses we have to take. No telling what it does to our senses. Of course it is needed as part of the cocktail so I guess dealing with taste problems is a small price to pay. I still hated it though. John(FNHL-1-4A-5/10)