NEW TO CSN

boardwalkgirl
boardwalkgirl Member Posts: 269
in Head and Neck Cancer #1
I am new to the boards so thought I would introduce myself. I have been reading info on here for the past few days and thought it was time to join. I had surgery in April 2012 to have what I had been told was a branchial cleft cyst removed. After a cat scan, ultrasound and needle biopsy which came back benign and meeting with 2 ENT's I felt pretty comfortable that it was ok and was really just a cyst. Surgery was pretty much a piece of cake and I thought things were going well until I went to have stitches removed and found out that they had found malignancy in the lining of what I was now told was a lymph node that had gone cystic. After 3 pathologist reviewed it, I was diagnosed with Squamous Cell Carcinoma with unknown primary. MRI of head and neck clear, PET scan clear. So next Monday, I am to start 35 treatments of radiation, and Cisplatin. This Friday, I have PEG tube inserted and port placed. Trying to face this with positive attitude, I have read everything I can to prepare myself. Has anyone used honey to help prevent mouth sores from the radiation? I read a study where it said the people that used it 15 minutes before and after radiation had less severe mouth sores. I figure as long as it doesn't hurt, it is worth a try. Any other suggestions will be greatly appreciated.

Comments

  • BarefootBob
    BarefootBob Member Posts: 72
    #2
    Honey...
    I was told that yes, honey has been know to help with moth sore during rads just yesterday. Another great thing also about honey, is try to local honey, if possible. It may be a bit more expensive - but there is something in local honey to your area that your body reacts to much better.

    Welcome to CSN, as I am new here too. But nothing but wonderful people with tons of advice. Not to mention a great place to help you in a support group too. I come here every day now just to read and post, when necessary. Good luck in your treatments.

    ~Bob
  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    I've heard the same about honey....
    be sure to ask your rad-onc if it's ok to use it before treatments, tho I'm sure after treatment, as much you want is fine. Several of us on here have gotten MuGard from our Oncologists. It is a protectorant against mouth sores...Start using right away, and you may end up having none. I had one when I first started rads, and have been using MuGard faithfully....now I'm down to only 7 rads left (out of 35), and have had NO sores since....it really worked for me.

    Don't forget the baking soda and salt rinses several times a day, too...they keep your mouth clean, and less irratated.

    Oh...BTW...the honey Laralyn was using was Manuka Honey...it's a super high antibiotic honey from New Zeeland...and can be purchased at the health food store. It worked for her until she couldn't take the taste/texture any longer....then she went to MuGard.

    p
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    welcome
    Hi boardwalkgirl,

    Welcome to the club nobody wants to belong to, but I am certainly glad I found it. While my case is different from yours, we are, as they say (here) on the same train. I never tried the honey idea, it doesn’t seem like it could hurt, but you should ask around. For mouth sores, I dealt with them after I got them, not before, with Lidocaine HCL OS 2%, it is a very numbing experience.

    The positive attitude is commendable as it makes dealing with life’s little challenges much easier. Good luck and much peace with your PEG and port.

    Stay happy,

    Matt
  • Pam M
    Pam M Member Posts: 2,196
    #5
    Manuka Honey
    I read about it, but didn't try it during rads (didn't have it at my local place at the time). I recall there's a certain number you want to get - don't recall the number, or if it's some kind of "strength" or what.

    so, you're in the whirlwind that is beginning treatment. Do well. Keep us posted.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #6
    Pam M said:

    Manuka Honey
    I read about it, but didn't try it during rads (didn't have it at my local place at the time). I recall there's a certain number you want to get - don't recall the number, or if it's some kind of "strength" or what.

    so, you're in the whirlwind that is beginning treatment. Do well. Keep us posted.

    boardwalk
    Note Phrannie's suggestion about the "new" stuff to use- seems to be better than just the old Magic Mouthwash I only used.

    As also noted, sorry to hear you've joined us, but you're most welcome to be here. I, too, was unknown Primary, being NPC. You are going to be okay and survive this thing. Will take you down a road that might be rough, but also might not be so rough. Only time will tell, but even in the worst case- all you gotta do is keep your Drs in the Loop as to how you are doing, and they'll help to make sure what you experience is acceptable to you, and it will be.

    We are all here to help, so please do let us know of any concerns, etc. I'm 3+ years, post-tx, and doing well, and I'm not even close to be a longterm survivor, as some others are. I have said in the past that the foundation of a H&N treatment mindset is a single little fact- that you will survive. It is fact, along with survivng well. You will...

    Believe

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    Hi Walkgirl

    You are in the right place for help and support, so stay connected and informed. Sorry to hear you are going to have to go through this but it only makes you are better person in the end. Like you said staying positive is one factor and to me praying is the other.

    Welcome to the Family
    Hondo
  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
    Welcome, but sorry you have
    Welcome, but sorry you have a need to be here. This is a great site for help, support and encouragement. I pray your treatment goes well and you have few or no side effect.

    Debbie
  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    #9
    jim and i said:

    Welcome, but sorry you have
    Welcome, but sorry you have a need to be here. This is a great site for help, support and encouragement. I pray your treatment goes well and you have few or no side effect.

    Debbie

    update
    Had my chemo teaching today. Cisplatin every 3 weeks for 2 days at a time. That starts Monday. Had my final radiation prep today too, marked the mask. So Monday is the big day. I asked about the honey and they said even though they had not heard of it, it was worth a try and to let them know if it helped. They did give me a list of suggestions for dealing with the dry mouth and thick mucous. One was drinking papaya juice every day??? Anyone tried that? Tomorrow is port and peg tube.Thanks everyone for the words of encouragement. I think this will help me get thru the next several weeks and months.
  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    #10
    jim and i said:

    Welcome, but sorry you have
    Welcome, but sorry you have a need to be here. This is a great site for help, support and encouragement. I pray your treatment goes well and you have few or no side effect.

    Debbie

    update
    Had my chemo teaching today. Cisplatin every 3 weeks for 2 days at a time. That starts Monday. Had my final radiation prep today too, marked the mask. So Monday is the big day. I asked about the honey and they said even though they had not heard of it, it was worth a try and to let them know if it helped. They did give me a list of suggestions for dealing with the dry mouth and thick mucous. One was drinking papaya juice every day??? Anyone tried that? Tomorrow is port and peg tube.Thanks everyone for the words of encouragement. I think this will help me get thru the next several weeks and months.
  • Pumakitty
    Pumakitty Member Posts: 652
    #11
    boardwalkgirl said:

    update
    Had my chemo teaching today. Cisplatin every 3 weeks for 2 days at a time. That starts Monday. Had my final radiation prep today too, marked the mask. So Monday is the big day. I asked about the honey and they said even though they had not heard of it, it was worth a try and to let them know if it helped. They did give me a list of suggestions for dealing with the dry mouth and thick mucous. One was drinking papaya juice every day??? Anyone tried that? Tomorrow is port and peg tube.Thanks everyone for the words of encouragement. I think this will help me get thru the next several weeks and months.

    Thanks for update
    You are in teh right place for information. I am sending hugs and prayers every day that everything goes good for you. Dad found the best thing for his dry mouth was just drinking water.

    Kathy

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