Adenoid Cystic Carcinoma

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BeacherBum
BeacherBum Member Posts: 32
in Head and Neck Cancer #1
Hello everyone. I was diagnosed with AdCC in January of this year after having a tumor removed from my soft pallet. After surgery came 7 weeks of radiation to "mop up" any left over cells. 35 treatments later I lost all of my facial hair leaving me with only a partial neck beard that actually looked rather amusing but I digress.

I'm about 8 weeks out of radiation treatment and I have recovered my taste thought it is hyper-sensitive to say the least. My facial hair along with the hair on the back of my head are slowly trying to recover, but my biggest issue by far is the mucositis.

Ohh, by the way, I'm only 29. The average person who is lucky enough to have this cancer is twice my age. This has it advantages and disadvantages.

Anyway, the point of me posting this is to see if anyone has any tips moving forward. Also, if anyone is interested in more details, feel free to message/email me.

Thanks for reading,
J

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
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    Welcome Aboard Bum
    LOL, had to take that opportunity, but in all seriousness, welcome to the forum.

    While I had tonsil cancer I did have the 35 rads....along with chemo. Like you I lost a good portion of beard, along with taste and saliva, of which about 90%+ of the saliva and taste have returned.

    Now two years post treatment I have a thinned beard, non-existant on the radiation side...less to shave so that's cool...oh, and I'm almost twice your age as referenced, LOL...thanks for that :)...

    I didn't have a problem with thick mucous, but some on here have and will chime in soon. They have a lot of differing aids, machines and suggestions.

    Again, welcome to the forum, awesome people here and tons of personal experience, information sharing and knowledge.

    Best,
    John
  • BeacherBum
    BeacherBum Member Posts: 32
    #3
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    Skiffin16 said:

    Welcome Aboard Bum
    LOL, had to take that opportunity, but in all seriousness, welcome to the forum.

    While I had tonsil cancer I did have the 35 rads....along with chemo. Like you I lost a good portion of beard, along with taste and saliva, of which about 90%+ of the saliva and taste have returned.

    Now two years post treatment I have a thinned beard, non-existant on the radiation side...less to shave so that's cool...oh, and I'm almost twice your age as referenced, LOL...thanks for that :)...

    I didn't have a problem with thick mucous, but some on here have and will chime in soon. They have a lot of differing aids, machines and suggestions.

    Again, welcome to the forum, awesome people here and tons of personal experience, information sharing and knowledge.

    Best,
    John

    Thanks John. I try to keep
    Thanks John. I try to keep things light when dealing with such a (insert negative word of choice here) topic. The loss of saliva is a major pain. I have found that as I ween myself off the Roxicet and sloooooowly make the switch from carnation instant breakfasts to semi real foods, that it has gotten a little better. According to my speech pathologist, nurses, and Dr's, I'm apparently ahead of schedule. But keep in mind, they base these time frames on people of a different age group.

    I find the hardest part is the disparity between my mind and body. My mind wants things back to some semblence of normalcy ASAP, but my body has a slightly different plan. I reckon this is pretty normal for being just 8 weeks outside of radiation treatment and I just gotta take it one day at a time :)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
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    BeacherBum said:

    Thanks John. I try to keep
    Thanks John. I try to keep things light when dealing with such a (insert negative word of choice here) topic. The loss of saliva is a major pain. I have found that as I ween myself off the Roxicet and sloooooowly make the switch from carnation instant breakfasts to semi real foods, that it has gotten a little better. According to my speech pathologist, nurses, and Dr's, I'm apparently ahead of schedule. But keep in mind, they base these time frames on people of a different age group.

    I find the hardest part is the disparity between my mind and body. My mind wants things back to some semblence of normalcy ASAP, but my body has a slightly different plan. I reckon this is pretty normal for being just 8 weeks outside of radiation treatment and I just gotta take it one day at a time :)

    One Day at a Time
    Yes, but unfortunately it's much slower than that....recovery is measured more in weeks and months versus days and week....

    But in most of us, it does get better, just slowly...hang in there, keep striving day by day...and never give up.

    For now and awhile, get in the habit and used to having a bottle of water with you pretty much constantly.

    Best,
    John
  • BeacherBum
    BeacherBum Member Posts: 32
    #5
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    Water
    I have had a bottle of water with me ever since my initial surgery back in January. I don't see that changing anytime soon, if ever.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
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    BeacherBum said:

    Water
    I have had a bottle of water with me ever since my initial surgery back in January. I don't see that changing anytime soon, if ever.

    Stay Positive
    I'm sure that you'll come through with a return in saliva production, most have, some not as much...but even at two years out, I feel that occasionally I still have some added taste.

    JG
  • Dav1965
    Dav1965 Member Posts: 132
    #7
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    Try Biotene
    My salava glands were desroyed during radiation. Water drys my mouth out so bad. After i drink i spray biotene moisturizing mouth spray to keep my mouth moist. Good luck. David
  • BeacherBum
    BeacherBum Member Posts: 32
    #8
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    Dav1965 said:

    Try Biotene
    My salava glands were desroyed during radiation. Water drys my mouth out so bad. After i drink i spray biotene moisturizing mouth spray to keep my mouth moist. Good luck. David

    I have biotene mouthwash and
    I have biotene mouthwash and the gel. Both of those seem to buy me a small window so I use them before I eat.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
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    BeacherBum said:

    I have biotene mouthwash and
    I have biotene mouthwash and the gel. Both of those seem to buy me a small window so I use them before I eat.

    Beacherbum- I love the
    Beacherbum- I love the avatar!!!! Awesome.


    Biotene lasts about 15 minutes with me. Less if I try and talk. My dry mouth is really maddening. I am miserable trying to sleep. Eating stinks too. I dunno if it will ever get any better than it is now because the only salivary gland I have left was fried with rads.

    When I use up my case of biotene stuff I'm going to try that stoppers 4.

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