radiation therapy to the neck and taste buds

markstevenvegas
markstevenvegas Member Posts: 11
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello everyone. I'm curious if anyone else has had radiation treatments to the neck. I completed 15 sessions of radiation two weeks ago for a total dose of 3000 cGY. It was not fun! It has been the most agonizing thing I've been through since my dx in Dec. 09'. I'm still without any taste buds and my saliva is only 25% of what is should be. Has anyone else had radiation to the neck? If so, how long did it take to get your taste buds and saliva back? Everything tastes like cardboard. I completed 5 rounds of R-CHOP January thru April and it was not nearly as bad as the radiation. I keep reading that it could take 2 to 6 months for my taste buds to come back. ~Ughh.
Original dx in Dec. 09' B-cell Follicular NHL Stage II Grade III only located in my neck. (lymph nodes on both side of neck and a mass deep in my throat at the base of my tongue).
I have yet to find someone who has had radiation to the neck.
Thanks everyone. Mark

Comments

  • TheMWord
    TheMWord Member Posts: 23
    #2
    I had a similar experience
    Even though my treatment was for stage 2B Hodgkin's, I had a lot of problems with my tastebuds and salivary glands. I had problems for about 3 weeks, couldn't taste anything. I had the same amount of treatments, but mine came back very quickly. It really depends on the person as to how long it will take. I was told the same thing. Someone suggested I take iron supplements to help bring them back, so ask about that. Talk to your doctor about what you can do, and suggestions about what can keep you hydrated and still reasonably nutritional.

    By the way, I recommend eating watermelon. It keeps you hydrated, and it's not harsh on the throat.
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #3
    neck
    hey Mark, three years ago I had a tumor removed from my neck, it was squam. cell cancer, had eight weeks of chemo with radiation.Wish I could tell you that you will bounce back soon, but I can't, it did take me about 6 months to start getting my taste buds back, always had to carry water around because of the dryness in the mouth. The positive thing is that you will get your taste buds back, for me it was the savory side first, sweet's took a lot longer, but hey thats a good thing! hahahahaha There is a product out there from your Dentist that will help you make saliva, you should check into that. So far with the Chemo I'm getting now, I still have my taste buds and that is huge! I know what you are going through, just know that it will get better!!!!! good luck Vinny
  • markstevenvegas
    markstevenvegas Member Posts: 11
    #4
    vinny59 said:

    neck
    hey Mark, three years ago I had a tumor removed from my neck, it was squam. cell cancer, had eight weeks of chemo with radiation.Wish I could tell you that you will bounce back soon, but I can't, it did take me about 6 months to start getting my taste buds back, always had to carry water around because of the dryness in the mouth. The positive thing is that you will get your taste buds back, for me it was the savory side first, sweet's took a lot longer, but hey thats a good thing! hahahahaha There is a product out there from your Dentist that will help you make saliva, you should check into that. So far with the Chemo I'm getting now, I still have my taste buds and that is huge! I know what you are going through, just know that it will get better!!!!! good luck Vinny

    Thanks for your feedback
    Thanks everyone for your input. I appreciate it. I certainly hope your all well. Mark
  • britta
    britta Member Posts: 107
    #5
    Radiation to Neck
    My husband had radiation to the neck many, many years ago. He too lost the saliva in his mouth. His doctor finally gave him some pills for it, but we read the side effects and they were scary. He sucked on sugar free hard candy a lot and that helped. I can't remember if he lost taste buds, don't think so, but I remember he was so very tired for a long time.
  • nhmom73
    nhmom73 Member Posts: 3
    #6
    taste changes
    I did 6 rnds of RChop for dlbc Lymphoma and finished 22 rnds of radiation 2 weeks ago. You are correct, the radiation was by far the worst, though everyone thinks it is easier and you seem to lose your support after the chemo...Anyhow..Just got my taste back today. YEA.. A week ago I did find something that was tolerable to eat...the only thing I found. Raw veggies. Tomatoes, lettuce, celery, peppers, cucumbers. Glad to be able to eat real food again though. Good luck to you, I hope you enjoy eating again very soon..
  • Hector_LDN_UK
    Hector_LDN_UK Member Posts: 2
    #7
    nhmom73 said:

    taste changes
    I did 6 rnds of RChop for dlbc Lymphoma and finished 22 rnds of radiation 2 weeks ago. You are correct, the radiation was by far the worst, though everyone thinks it is easier and you seem to lose your support after the chemo...Anyhow..Just got my taste back today. YEA.. A week ago I did find something that was tolerable to eat...the only thing I found. Raw veggies. Tomatoes, lettuce, celery, peppers, cucumbers. Glad to be able to eat real food again though. Good luck to you, I hope you enjoy eating again very soon..

    taste changes
    I totally agree with you, people thinks that everything is back to normal now with the Radio cuz is not too bad, but I just was telling my friend the other day that I'd say Radio is as bad or worse than Chemo but I thought it was just me, I'm glad to hear I'm not the only one that thinks it.

    I did 3 cycles of R-Chop from April to June, and started my Chemo at the end of June... 15 sessions in total, and I'll be finishing on thursday... although I've been told that the Radiation will keep on working and the side effects will reach it's peak 10 days after.

    I've been obsessed with the loss of taste in the last days and really concerned thinking when it will come back and that's how I came across this site.

    I'm so looking forward to get my taste back... I love food and now more than ever I've realized that...
  • markstevenvegas
    markstevenvegas Member Posts: 11
    #8
    Hector_LDN_UK said:

    taste changes
    I totally agree with you, people thinks that everything is back to normal now with the Radio cuz is not too bad, but I just was telling my friend the other day that I'd say Radio is as bad or worse than Chemo but I thought it was just me, I'm glad to hear I'm not the only one that thinks it.

    I did 3 cycles of R-Chop from April to June, and started my Chemo at the end of June... 15 sessions in total, and I'll be finishing on thursday... although I've been told that the Radiation will keep on working and the side effects will reach it's peak 10 days after.

    I've been obsessed with the loss of taste in the last days and really concerned thinking when it will come back and that's how I came across this site.

    I'm so looking forward to get my taste back... I love food and now more than ever I've realized that...

    Hang in there
    Hector, hang in there. I finished 15 radiation treatments exactly 4 weeks ago. The last two weeks of radiation were very bad. I was on a liquid diet and miserable because I could not taste food. Each day since my last treatment has gotten better. I have regained partial taste bud recovery and each day is getting better. The most frustrating thing is that I can't taste sweet or salty stuff that good yet however, it is coming along. It is better than it was 4 weeks ago. My saliva is better but is still bad in the morning. I only have about 1/3 of my salivary function compared to before treatments. I'm still drinking alot of water. The fatigue is gone for the most part. Still have "chemo-brain" though. Wishing you the best. Mark

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