Recovery

Susanmorr
Susanmorr Member Posts: 14
in Head and Neck Cancer #1

HI this is my first time on here . I finished treatment feb 23 2013,I have had every side effect that one can get. My question is when can I expect the blisters to go away so I can get rid of my feeding tube. Now I also have extreme dry mouth any suggestions on how to ease the dry mouth .thanks 

   Susan

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    #2
    Susan

    Welcome. Sorry you had the need to find us. Are the sores in your mouth or on your lips? Mine were limited to my lips and visually cleared within a week or two of finishing tx. I am now a year post tx and, while no sores, my lower lip is still very sensative. I continue to see improvement. My ONC wanted to keep my feeding tube in 12 weeks post tx until I had my 1st scan, however, once I was not using it, I chose to have it removed and never looked back. Some people have them quite awhile. For dry mouth I tried Biotene but it did not do much for me. You might try Salese. I no longer have to have water bottles strapped to me when I leave the house but am still hoping to see continued improvement with the saliva. I still have periods of time where no matter how much water I drink, my mouth is dry a minute later. Those events are less frequent and I have yet to figure out what triggers them.

    Candi

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    Hi Susan and welcome to our slice

    of the internet.  You've found a great place to ask questions.....the folks here are knowledgable, supportive, and well...just great people!  It's also nice to be able to talk to others who truly understand where you're coming from.  Everybody seems to heal at different rates, that's a fact....with one or more symptoms being slower to come around than others.  I truly feel for you.....my mouth was the worst part of the whole treatment for me.....I was miserable with a capital M.  Are you still using the baking soda/salt mix for a rinse and spit?  If you are....GOOD!  Have you tried L-glutamine powder mixed in water....it also helps heal mouth sores.  You can get that at the health food store.

    Dry mouth....well, I think all of us who finsished treatment in the last year are still suffering from that to some degree.  I'm 11 months out of treatment, and have about 30% back....I can lick my lips now, but unless I'm eating soup, I have to have a lot of water to get it down.  It will get better, but by degrees, not leaps and bounds.  I use Stoppers 4 to get my mouth damp at night.

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
    side effects, who needs them.

     

    Susan,

    Welcome to the H&N forum, it is nice to meet you,

    I would expect the sores to be clearing up; they seem to heal at a different rate for each of us.

    As for the PEG, I had it popped at 2-weeks post.  Even though I wasn’t eating much (hated taste and feel) I could drink smoothies and that is what I did.

    For dry mouth I have been using Xylimelt tablets, they work very well for sleep, play or work.  Matter-of-fact I am expecting some to arrive in the mail today.

    Matt

     

  • hawk711
    hawk711 Member Posts: 566
    #5
    CivilMatt said:

    side effects, who needs them.

     

    Susan,

    Welcome to the H&N forum, it is nice to meet you,

    I would expect the sores to be clearing up; they seem to heal at a different rate for each of us.

    As for the PEG, I had it popped at 2-weeks post.  Even though I wasn’t eating much (hated taste and feel) I could drink smoothies and that is what I did.

    For dry mouth I have been using Xylimelt tablets, they work very well for sleep, play or work.  Matter-of-fact I am expecting some to arrive in the mail today.

    Matt

     

    HI Susan

    Just wanted to offer up my 2 cents on this topic.  The sores will heal slowly and be careful not to brush too hard.  We all heal differently for sure, but they will get better.  On the feeding tube, I would take that slowly.  I had mine for 11 months post treatment and it kept me healthy, my weight up, and I could go to work with it too.  I just didn't use it other that at my own home.  Once the tube is out, it is all up to you to swallow your calories daily and that can be a big task when your mouth hurts and you aren't hungry.   so go slow and be careful.  This is not a race to the finish, but a stride to that finish.

    Good luck with this,

    Steve

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    CivilMatt said:

    side effects, who needs them.

     

    Susan,

    Welcome to the H&N forum, it is nice to meet you,

    I would expect the sores to be clearing up; they seem to heal at a different rate for each of us.

    As for the PEG, I had it popped at 2-weeks post.  Even though I wasn’t eating much (hated taste and feel) I could drink smoothies and that is what I did.

    For dry mouth I have been using Xylimelt tablets, they work very well for sleep, play or work.  Matter-of-fact I am expecting some to arrive in the mail today.

    Matt

     

    I just ordered some Xylimelts, Matt

    I've been fretting and stewing about how I was going to keep my mouth half way damp on the airplane....can't carry a bottle of water, and my Stoppers 4 is too many ounces....

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #7
    phrannie51 said:

    I just ordered some Xylimelts, Matt

    I've been fretting and stewing about how I was going to keep my mouth half way damp on the airplane....can't carry a bottle of water, and my Stoppers 4 is too many ounces....

    p

    I ordered some Stoppers 4, Phrannnie

    Phrannie,

    I tell you they do work to fight off dry mouth.

    I had to hike (site inspection) on the Oregon coast over a period of hours(very rough hike). I carried a water bottle and only took 1 sip.  Without the Xylimelt’s I could not have quenched my dry mouth without multiple bottles of water.  Anytime I don’t want to be constantly drinking water I pop a tablet or two.  A box of them lasts longer so I assume I am getting better.

    I ordered some Stoppers 4 (because of you) I want to give it a try.

    Matt

  • janetluvsron
    janetluvsron Member Posts: 116
    #8
    CivilMatt said:

    I ordered some Stoppers 4, Phrannnie

    Phrannie,

    I tell you they do work to fight off dry mouth.

    I had to hike (site inspection) on the Oregon coast over a period of hours(very rough hike). I carried a water bottle and only took 1 sip.  Without the Xylimelt’s I could not have quenched my dry mouth without multiple bottles of water.  Anytime I don’t want to be constantly drinking water I pop a tablet or two.  A box of them lasts longer so I assume I am getting better.

    I ordered some Stoppers 4 (because of you) I want to give it a try.

    Matt

    hello,
    where can we find

    hello,

    where can we find Xylimelts and Stoppers 4?

    thankyou,

    janet

  • michdjp
    michdjp Member Posts: 220
    #9
    janetluvsron said:

    hello,
    where can we find

    hello,

    where can we find Xylimelts and Stoppers 4?

    thankyou,

    janet

    Walgreens

    Walgreens has them for about 18.00 dollars .  stoppers 4  I believe is only available on the Internet.

    good luck

    michelle

  • phrannie51
    phrannie51 Member Posts: 4,716
    #10
    janetluvsron said:

    hello,
    where can we find

    hello,

    where can we find Xylimelts and Stoppers 4?

    thankyou,

    janet

    You can get Stoppers 4 at

    drugstore.com.  I bought the Xylimelts at Amazon.com.....I didn't realize they were at Walgreens or I would just have waited and gone to town.

    p

  • yensid683
    yensid683 Member Posts: 349
    #11
    phrannie51 said:

    I just ordered some Xylimelts, Matt

    I've been fretting and stewing about how I was going to keep my mouth half way damp on the airplane....can't carry a bottle of water, and my Stoppers 4 is too many ounces....

    p

    Carrying a water bottle through TSA

    Believe it or not, you can carry a water bottle through the TSA check point!  I got a letter from my ONC declaring it medically necessary.  I put it in the tray with my 3-1-1 bag of toiletries and tell them 'medically necessary' when the try to throw it out.  They'll take it and test it with a strip that the hold over it, I'm thinking that they're looking for something volatile, but I've traveled through several airports, small and large and not had a problem!  Well, perhaps one, as the plane descends the bottle collapses, the air pressure changes.  I've also seen people drain their bottle, put the empty in the tray and then re-fill it from a water fountain!

    Contact TSA, contact your ONC, they're not always the ogres that the media makes them out to be!

    Peter

  • yensid683
    yensid683 Member Posts: 349
    #12
    Welcome too

    The dry mouth does get better, but very slowly.  I'm 8 months out of treatment and like most, am recovering some saliva.   At first it was frustrating and disheartening that I could barely stand to put anything into my mouth that wasn't basically soup!  I struggled to balance taking a bite of something and the right amount of water.  It takes a while to get the balance right, but it will get there.  My radiation oncologist let me know that it will take up to 24 months for saliva to recover, and I'm encouraged by his first statments "saliva will come back" and the progress I've been making.  I recently had some spaghetti and found that I'd taken a fork-ful, chewed it and swallowed it without taking an additional sip of water!  I tried another bite and that didn't do as well, but now it seems that if I take small amounts, chew slowly, I'll generate just enough saliva to swallow without additional water. The downside of that is that my food will get cold before I get to eat much of it, so I still have my water.

    It seems such a minor thing, to eat without having a glass of water to sip as you do, but it is monumental to those of us who've come out of the mill that treatments can be. 

    Hang in there, it will get better!

    Peter

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