Three Weeks Down, Four Weeks Left

SandB_Bill
SandB_Bill Member Posts: 1
in Head and Neck Cancer #1

Hello everyone, I joined the board back in November shortly after I was diagnosed, just haven’t posted.. Since then its been a hell of a ride. I’m doing seven weeks under the mask and just finished week three starting week four today. So far I’m managing okay, I’m still eating but everything is soft, lots of soups and such.. I have a daily Slurpee from 7/11 that I never cared for before but seems to sooth my throat and shove another 160 calories down me. Right now the biggest problems I have is a sore mouth, dry mouth and thick mucous that hurts to spit out.. I’m starting to spit up more blood at times too, but doctor doesn’t seem to be concerned. I’m on OxyContin 15mg twice a day and Percocet 7.5 for breakthrough pain.. I have been on Gabapentin for about 5 months for neuropathy from first round of chemo. I use the magic mouth wash and rinse with baking soda probably four or five times a day. I’m really dreading the next four weeks knowing what is coming my way.. doesn’t help either having sinus problems and dealing with that mask daily, I hate that mask.. I want to go hulk on it every time they fasten it down. My wife is super supportive and has not missed a doctors appointment or treatment from the start, so it really helps having that extra support. Well just wanted to kind of introduce myself, I’m sure I will be reading much more now that I’m getting to the hard part.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited September 2016 #2
    WELCOME, 43% down, almost half-way

    SandB_Bill,

    Welcome to the H&N forum, sorry that you are here and now many know your story (or at least part of).

    I never liked the mask, but came to find it interesting.  Also, I took 1Lorazapam daily to dull the edge.

    I am aa big proponent of magic mouth wash from my cancer center pharmacy.  They are very different and I was good for 6 bottles and I swished, sipped and swallowed every drop.

    Keep up the calories and hydration, keep your team informed on ALL changes and good luck.

    Matt

  • mrspaul
    mrspaul Member Posts: 24
    edited September 2016 #3
    Magic Mouth Wash ?

    Hi - is this magic mouth wash something that is available in a regular pharmacy?  My husband is going to start chemo soon for his cancer in his neck - he has cancer in his tonsils - both tonsils were removed and the cancer is in the left lymph node.  he is also going to have radiation - but an aggressive round of chemo first for nine weeks.  I want to prepare myself with everything my husband will need for when the radiation comes.  They are implanting a chemo port in soon to begin, my husband is age 52, is in very good health and they said they are putting in a feeding tube just before the radiation begins.  

    thank you for the help about the mouth wash - I am very concerned about all the issues with sore mouth, sores, dryness that I am reading about.

    ellen

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    mrspaul said:

    Magic Mouth Wash ?

    Hi - is this magic mouth wash something that is available in a regular pharmacy?  My husband is going to start chemo soon for his cancer in his neck - he has cancer in his tonsils - both tonsils were removed and the cancer is in the left lymph node.  he is also going to have radiation - but an aggressive round of chemo first for nine weeks.  I want to prepare myself with everything my husband will need for when the radiation comes.  They are implanting a chemo port in soon to begin, my husband is age 52, is in very good health and they said they are putting in a feeding tube just before the radiation begins.  

    thank you for the help about the mouth wash - I am very concerned about all the issues with sore mouth, sores, dryness that I am reading about.

    ellen

    magic mouth wash

    mrspaul,

    Magic mouth wash is made up by a compounding pharmacy usually at your doctor’s prescription.  Mine was by my rad onc and was very helpful for throat, mouth and tongue discomfort.  There are various recipes and mine was good for me.  Some like it others don’t.

    I use to take a slug in the parking lot prior to rads.  You develop a routine for whatever works for you and you do it over and over till it is over. Like I said, I went through 6 bottles and when my treatments were finished I no longer needed it.

    Cancer treatment is a different life for ALL involved.

    Matt

  • Tmclaren
    Tmclaren Member Posts: 15
    #5
    mrspaul said:

    Magic Mouth Wash ?

    Hi - is this magic mouth wash something that is available in a regular pharmacy?  My husband is going to start chemo soon for his cancer in his neck - he has cancer in his tonsils - both tonsils were removed and the cancer is in the left lymph node.  he is also going to have radiation - but an aggressive round of chemo first for nine weeks.  I want to prepare myself with everything my husband will need for when the radiation comes.  They are implanting a chemo port in soon to begin, my husband is age 52, is in very good health and they said they are putting in a feeding tube just before the radiation begins.  

    thank you for the help about the mouth wash - I am very concerned about all the issues with sore mouth, sores, dryness that I am reading about.

    ellen

    Chemo

    Hi Ellen was just wondering about your husband having chemo before radiation I always assumed they were done together .When I had my treatments my doc's told me to rinse my mouth with club soda throughout the day . Best wishes on your husband's treatments 

  • Angel5
    Angel5 Member Posts: 10
    edited September 2016 #6
    Club soda or baking soda?

    I thought the rinse was baking soda and salt until if or when you could not tolerate the salt.

  • Tmclaren
    Tmclaren Member Posts: 15
    #7
    I used the club soda until

    I used the club soda until about the 6th week of my treatments and than I got very painful thrush that I was given pills for . My oncologist gave me something called pink lady but unfortunately it burned so bad I couldn't take it .The club soda seemed to work for me until the thrush set in 

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited September 2016 #8
    I think Pink Lady...and Magic Mouthwash

    are the probably the same thing...MM is pink if I recall.  It's usually a combo of Nystatin/Malox and Lidocaine.  It works to numb your mouth and throat (my mouth couldn't tolerate anything...not even plain water).  Bill...have you tried Lorazipam before you get under the mask?  It works great for anxiety.  I kept a spray bottle of Stoppers 4 next to my bed for dry mouth until my mouth couldn't handle it any more.

    Mrs. Paul....Ask the Oncologist or RO about the MM....also, stop by your local Health Food Store and get L-Glutamine powder to mix with water.  It's good for a sore mouth.

    Tmclaren....Some Drs. give chemo before rads...AND during rads.  I had chemo during rads, and 9 more weeks after rads were over.  It seems to also depend on which part of the oral cavity is affected.  Mine was NPC, and adjuvant chemo seems to be the norm for that.

    p

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