New to Nasapharyngeal Cancer

JDHANNA
JDHANNA Member Posts: 4
edited March 2014 in Head and Neck Cancer #1
My husband is 47 years old and was diagnosed February 5th, 2010 with stage IVa cancer. He has completed 33 rad treatments and 3 doses of cysplatin. His doctor is scheduling him for at least 2 more doses of cysplatin with 5FU. His worst time was 2 weeks after treatment, he had nausea and vomiting. Thank God for the chemo doctor insisting that his peg tube be placed before treatment started. He has lost 30 pounds so far. If anyone out there has any advice for him getting his taste buds back and start to eat again.

I have been reading the discussion boards for a while now and have found alot of good and helpful advice.

I just want to say that I admire each and everyone of you for your courage and I pray everyday for a cure.

Living in hope.

Comments

  • Hal61
    Hal61 Member Posts: 655
    #2
    Taste Buds
    Hi JD, welcome. There are a number of members here who are nasapharyngeal cancer survivors, and they would be best sources on specifics, but the taste bud problem is common to head and neck treated patients so I'll give you the news I've heard and my experience.

    You will hear different numbers and times, but regaining some or most taste buds can take anywhere from a couple of months to a year or better after treatment ends. I'm 6 weeks past treatment and most of mine is still gone. I have regained a bit already. I had a French cruller the other day with some coffee, and both were at about 80 to 85% tasty. I try other things here and there and I'm o.k with vanilla shakes, and several smoothies, but still coming up way short on solid foods. I can eat an egg, for example, but it tastes so bad I only get through about half of it at this point. So, you're husband has a ways to go according to most accounts. I try things, probably too much too often, but that's how you find out where your taste is at. I've heard--on this board--that standard zinc supplements can help, but I haven't tried that and would not without first consulting a nutritionist to make sure zinc introduces no complications.

    I thank you too for prayind daily for a cure. Mostly, I and others here are concerned with fighting a good and effective fight for ourselves and supporting others when we can. No one ever really mentions hoping for a cure beyond a clean scan . . . but it's a hope worth holding because someday it will happen.

    Best you you and your husband,

    Hal
  • JDHANNA
    JDHANNA Member Posts: 4
    #3
    Hal61 said:

    Taste Buds
    Hi JD, welcome. There are a number of members here who are nasapharyngeal cancer survivors, and they would be best sources on specifics, but the taste bud problem is common to head and neck treated patients so I'll give you the news I've heard and my experience.

    You will hear different numbers and times, but regaining some or most taste buds can take anywhere from a couple of months to a year or better after treatment ends. I'm 6 weeks past treatment and most of mine is still gone. I have regained a bit already. I had a French cruller the other day with some coffee, and both were at about 80 to 85% tasty. I try other things here and there and I'm o.k with vanilla shakes, and several smoothies, but still coming up way short on solid foods. I can eat an egg, for example, but it tastes so bad I only get through about half of it at this point. So, you're husband has a ways to go according to most accounts. I try things, probably too much too often, but that's how you find out where your taste is at. I've heard--on this board--that standard zinc supplements can help, but I haven't tried that and would not without first consulting a nutritionist to make sure zinc introduces no complications.

    I thank you too for prayind daily for a cure. Mostly, I and others here are concerned with fighting a good and effective fight for ourselves and supporting others when we can. No one ever really mentions hoping for a cure beyond a clean scan . . . but it's a hope worth holding because someday it will happen.

    Best you you and your husband,

    Hal

    Hi Hal,
    Thank you for the
    Hi Hal,

    Thank you for the advice. We go tomorrow to see the rad doctor and nutritionist and I'll say something then. Also my husband is the sickest he's been and right now he's not even taking any treatments. Is this normal? It's so hard to watch him and not be able to help him. I hope the second round of chemo doesn't knock him down.

    I guess I should say not only am I praying for a cure but like you said I'm praying for a recovery for each and everyone.

    Thank you.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Hi Jdhanna


    Welcome here to CSN, how we are affected by the treatment differs one from another but you can look for 2 to 3 months after the last treatment for taste to start coming back. His body will start healing and the scars will all fad away in time. I am glad to hear the radiation is finish, and like Kent the worst part for me was the Chemo but even that our bodies will heal from. I have lost 55lbs in total and have gained some of it back, and I enjoy my weight now.

    Wish you best and please keep posting
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #5
    JDHANNA said:

    Hi Hal,
    Thank you for the
    Hi Hal,

    Thank you for the advice. We go tomorrow to see the rad doctor and nutritionist and I'll say something then. Also my husband is the sickest he's been and right now he's not even taking any treatments. Is this normal? It's so hard to watch him and not be able to help him. I hope the second round of chemo doesn't knock him down.

    I guess I should say not only am I praying for a cure but like you said I'm praying for a recovery for each and everyone.

    Thank you.

    JDHANNA
    You wrote that your husband was the sickest he has been after treatment. This is fairly normal. I peaked with my side effects about three weeks after radiation. Unfortunately radiation is cumulative. We like to call it the gift that keeps on giving around here. I am sure that the chemo would make it worse too. I could only have radiation.

    I had and still have, actually my peg and I lost 4olbs. Like Scambuster, I think it was him, my problems started after radiation. I maintained my weight all thru and then I ended up not being able to keep anything down. I was on peg tube only. The radiation destroyed my mouth, and throat. I did not eat or drink ANYTHING for 5 months. I am still having issues, but I am quite sure I am on the worse case senario side. I have a genetic blood disorder which complicates my fight with cancer. Actually it's the reason I ended up with HNC. Most people here are eating pretty normally a year after treatment.

    The biggest thing is time. Also try to keep getting enough nutrition and calories for his body to heal. It feels like forever sometimes to see progress. Some say measure by the week, I measure by the month.

    I pray for strength for you both. It is wonderful that you are there for your husband. I know how rough it is to go it alone, so I am always in awe of those tireless caregivers that are there give it their all to help those going thru treatment. God Bless.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #6
    JDHANNA said:

    Hi Hal,
    Thank you for the
    Hi Hal,

    Thank you for the advice. We go tomorrow to see the rad doctor and nutritionist and I'll say something then. Also my husband is the sickest he's been and right now he's not even taking any treatments. Is this normal? It's so hard to watch him and not be able to help him. I hope the second round of chemo doesn't knock him down.

    I guess I should say not only am I praying for a cure but like you said I'm praying for a recovery for each and everyone.

    Thank you.

    Too early
    Your husband's largest battle is still being fought, JDHanna. I was at my sickest during the post-Chemo times. As for the taste buds, it's kinda early, you know. Now, ingest what he can- with a major stress on Nutrient quality, such as Ensure or Boost, etc.

    Down the road, getting the mouth healthy will be in play. Dentist can help with that- Prevident is a toothpaste some of us use. And Biotene products. Jim, Scam, and a few others know more than I do about the dental/mouth issues, which likely affects the taste buds. I'm 18-months, NPC, and taste still isn't where it was, and it seems some hotter substances are welcome, now- the taste sensation is more real, and okay.

    kcass

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