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  • thennies61
    thennies61 Member Posts: 285
    #22
    Sonja.K said:

    We Got This!

    Cool

    I started my thirty radiation today, one down, twenty nine to go!  Piece of cake Michelle, in and out.   I think this six weeks is going to go fast.  We got this.

    My burns were more like bad

    My burns were more like bad sun burn so wasn't to bad except when it started to peal off.I could swallow but not that good so used my peg tube more.Then towards the end ate more thats to my swollowing specialist that I was seeing.Have to adjust your water heat for shower or bathe as your skin is alittle more sensitive.I took showers mainly because the doctor kept my trach tube in and didn't want to take the chance of water getting inside.But seem you got the bases covered which is good.My main advise is that not to panic,relaxe and let everything take it's coarse.And drink lots and eat lots if you can but be sure to get your protein

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #23
    shell, lots of good advice

    shell, lots of good advice here but it looks like you've got it all covered.  you are going to do fine.  i used aquaphor on my burned neck and it worked miracles.  be sure to drink, drink and then drink some more.  keep us posted on your progress.  we'll be praying for you.

    God bless you,

    dj

  • phrannie51
    phrannie51 Member Posts: 4,716
    #24
    For your first chemo....

    Make sure you know where the bathroom is, and sit as close as possible.....you'll be massively hydrated during chemo.....it was all I could do to get there in time.  Also....pack something to eat.....when lunch time rolled around, everybody pulled out sack lunches.....I had nothing and was starved. 

    You'll nap through most of it. :)

    p

  • pollyann
    pollyann Member Posts: 1
    #25
    choice for anal cancer diagnosis

    I opted for chemo and radiation for 8 weeks  in 2011 because I didn't think I could handle a colostomy back daily situation. Misery from radiation burn in my genitals. for 6 months. cancer free in 16 months 2014 cancer returned.  surgery  was my only option. this entailed a permanent daily colostomy bag change. If I had done this the first time around I may not have had to have a permanent colostomy. What did I know.  

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #26
    welcome

    pollyann,

    Welcome to the Head & Neck Forum, sorry that you have cancer, but you may have the wrong forum.

    For a better response to your post, go back to the list of Discussion Boards and select the category which meets your condition.  Then start a new thread and introduce yourself.

    I hope this helps.

    CM

  • Kari2007
    Kari2007 Member Posts: 108
    #27
    Good luck, Shell

    Lots of great advice here, as always. I'm into my sixth week and still enjoying warm showers. My neck is pretty burned and has started to peel, but no oozing or bleeding at this point. I kind of jump around between various lotions - calendula cream, Miaderm, straight up aloe plant, and a non-petroleum based Aquaphor-like cream that has coconut and castor oil in it. 

    The biggest issue for me so far has been the lack of taste, which means I rely heavily on my feeding tube for calories. The mucus is also pretty awful, but that didn't hit me until the fifth week. Mucinex seems to help some, having a humidifier running at night, and then sleeping propped up on a wedge or pillows also helps. For some reason I've been finding myself sleeping with my mouth open more, which doesn't help the dry mouth from lack of saliva. 

    I am doing three high doses of cisplatin, and I'm usually knocked out pretty hardcore the first several days after infusion. The best advice I got for chemo was to stay on top of the anti-nausea meds. Don't wait until you're feeling nauseated. They gave me a total of four different meds to take after chemo and they really help. I also often take Zofran and Ativan as the mucositis seems to really irritate my digestive tract. 

    Eat all your favorite foods that you can still taste now and try to gain a little weight in the beginning. 

    These last several weeks have gone by really quickly. Now that I'm at the end, time seems to have slowed down a bit as I'm counting the days until I stop getting zapped. Good luck with your treatment and stop by to let us know how you're doing. 

    Kari

  • mrspaul
    mrspaul Member Posts: 24
    edited August 2016 #28
    I have a question:  The

    I have a question:  The oncologists or radiation/chemo people suggest or prescribe these lotions for the radiation burns before they occur and for things like mouth sores, etc.  I wont have to wait for these side effects to begin before I get help for the effects for my husband?  He has surgery on the 16th and chemo and radiation will be after that -- I am trying to read up on here so I know I know what to expect...

    also - what is a "peg" people are talking about -- my husband is having the tonsils and left lymph node removed - so I dont know if this "peg" would apply to him.  

    some people have mentioned a feeding tube ...dumb question - but is this put right into his stomach?

  • mrspaul
    mrspaul Member Posts: 24
    #29
    I have a question:  The

    I have a question:  The oncologists or radiation/chemo people suggest or prescribe these lotions for the radiation burns before they occur and for things like mouth sores, etc.  I wont have to wait for these side effects to begin before I get help for the effects for my husband?  He has surgery on the 16th and chemo and radiation will be after that -- I am trying to read up on here so I know I know what to expect...

    also - what is a "peg" people are talking about -- my husband is having the tonsils and left lymph node removed - so I dont know if this "peg" would apply to him.  

    some people have mentioned a feeding tube ...dumb question - but is this put right into his stomach?

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #30
    mrspaul said:

    I have a question:  The

    I have a question:  The oncologists or radiation/chemo people suggest or prescribe these lotions for the radiation burns before they occur and for things like mouth sores, etc.  I wont have to wait for these side effects to begin before I get help for the effects for my husband?  He has surgery on the 16th and chemo and radiation will be after that -- I am trying to read up on here so I know I know what to expect...

    also - what is a "peg" people are talking about -- my husband is having the tonsils and left lymph node removed - so I dont know if this "peg" would apply to him.  

    some people have mentioned a feeding tube ...dumb question - but is this put right into his stomach?

    good questions

     

     

    Mrspaul,

     

    FEEDING TUBE, put right in the stomach

    Percutaneous endoscopic gastrostomy (PEG) is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate

    You generally have plenty of time to get what you need.  Somethings you want  to be sure you have before a weekend.

    Not everyone gets a PEG or neck burn, but most have throat, mouth and tongue discomfort.  If pain meds or nausea meds are suggested, then you should have them at the stand by.  Magic mouth wash was a favorite of mine.

    The first few weeks are hit or miss on problem side effects, but your team should cover all the requirements.

    Some doctors insist on PEG’s some don’t, some people do ok without and for some it is a  lifesaver.

    This is an older thread, many will not look at. To get maximum response to your good questions, please start a new thread.

    Be prepared!

    Matt

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