Finished my 7 weeks of treatments

Charmit
Charmit Member Posts: 87
in Head and Neck Cancer #1

Hello all I just finished my 7 weeks of treatment this past Friday and I faired pretty well compared to others. No pain other the skin pain and that is because the last week my skin finally broke down and I have a few sores in my mouth that week as well. My questions are when does the skin heal because the pain is awful it’s so raw? And mouth sores when do they leave ya? I can only open my mouth very little due to them both. I was able to eat solid foods throughout  lack of taste was my issue and still is, answers on how long that takes to return the taste I mean. 

‘I’m thrilled this is behind me but would love to know when I will start feeling like me again?? 

Also the nasty taste in my mouth makes me feel my breath is gross all the time...is this norma? I mean I brush my teethe all the time and use the rinse all the time as well??

Thanks for listening to me ramble....

God Bless Charlene

Comments

  • dalaitom
    dalaitom Member Posts: 27 Member
    edited June 2018 #2
    Hey Charlene. Glad to hear

    Hey Charlene. Glad to hear things haven't been too bad for you. I've been following your story closely since your case seems almost identical to mine. I am currently on week 4 of therapy. I think I'll be very happy if I can come out the other side of this treatment in as good of condition as it seems you have. Please keep us updated.

    Tom

  • Charmit
    Charmit Member Posts: 87
    edited June 2018 #3
    dalaitom said:

    Hey Charlene. Glad to hear

    Hey Charlene. Glad to hear things haven't been too bad for you. I've been following your story closely since your case seems almost identical to mine. I am currently on week 4 of therapy. I think I'll be very happy if I can come out the other side of this treatment in as good of condition as it seems you have. Please keep us updated.

    Tom

    Hi Tom I will pray the rest

    Hi Tom I will pray the rest of your treatments go well. Like I said I faired well throughout treatment but now 3 days out and I’m feeling awful from neck pain cause my skin is so raw and now starting with the throat pain and sores in my mouth. Eating regular food but still no taste and that is a struggle, only lost 15lbs as of Friday and as of today 2 more. Please keep me posted how your doing and again I will pray for you....God Bless!!

  • bugsyboy
    bugsyboy Member Posts: 39
    edited June 2018 #4
    Cooking then Recovering

    Hiya Charlene, We continue cooking for two to four weeks after our last treatment.  Keeping a routine of oral care is extremely important during this time.  Baking soda/salt water rinses, Fluoride trays, magic mouthwash to help with meals, pain meds, and whatever else your care team prescribed.  Once we're done cooking, most of us progress very slowly during recovery.  I know I plateaued several times and thought, "This stinks", but things eventually got to where now I'm about 90-95% back to where I began.  My taste changed, then changed, then changed again.  Aside from bananas, fruit is still cardboard.  But most everything else is back.  Eventually, you'll find something that tastes close to normal and you'll eat whatever that is.  For me it was grilled cheese and chocolate milk.  I think I ate them for about two months.  Keep your chin up and know things will get better.

    Best of luck.

    Bugsy

  • Charmit
    Charmit Member Posts: 87
    edited June 2018 #5
    bugsyboy said:

    Cooking then Recovering

    Hiya Charlene, We continue cooking for two to four weeks after our last treatment.  Keeping a routine of oral care is extremely important during this time.  Baking soda/salt water rinses, Fluoride trays, magic mouthwash to help with meals, pain meds, and whatever else your care team prescribed.  Once we're done cooking, most of us progress very slowly during recovery.  I know I plateaued several times and thought, "This stinks", but things eventually got to where now I'm about 90-95% back to where I began.  My taste changed, then changed, then changed again.  Aside from bananas, fruit is still cardboard.  But most everything else is back.  Eventually, you'll find something that tastes close to normal and you'll eat whatever that is.  For me it was grilled cheese and chocolate milk.  I think I ate them for about two months.  Keep your chin up and know things will get better.

    Best of luck.

    Bugsy

    Thanks Bugsy I truly am

    Thanks Bugsy I truly am trying. Can’t do that nasty magic mouthwash and I gag on the trays now. But I brush and rinse all daylong. I CAN NOT WAIT TO TASTE FOOD AGAIN!!! I hate that we’re still cooking even after treatment wish there was a way to make it stop but as the saying goes it is what it is. I have gone through the tough part and I will continue to go through this. One day at a time they say and I know one day I will feel me again. Thank for the input much appreciate.

    God Bless 

    Charlene

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #6
    Crush

    Sounds like you are crushing this treatment thing. Awesome news. Hopefully you have some Silvadine Cream to use on the external neck wound for the next week or two. It's a life savior.  Congradulation on the Crush. 

  • Charmit
    Charmit Member Posts: 87
    #7
    Sprint Car Dude said:

    Crush

    Sounds like you are crushing this treatment thing. Awesome news. Hopefully you have some Silvadine Cream to use on the external neck wound for the next week or two. It's a life savior.  Congradulation on the Crush. 

    Sprint Car Dide I do not have

    Sprint Car Dide I do not have that cream where can it be purchased? Feel more crappy after the treatment then during well started feeling it the last few days. Holding ourt hope some normal will return ASAP!!

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #8
    Good to hear from you! How

    Good to hear from you! How was grad, proud MOMMA?

  • lorijeannj
    lorijeannj Member Posts: 56 Member
    #9
    Good to hear.  God bless and

    Good to hear.  God bless and enjoy more of the road to recovery.  Hoping the past is just that, the past.

  • Charmit
    Charmit Member Posts: 87
    #10
    debbiel0 said:

    Good to hear from you! How

    Good to hear from you! How was grad, proud MOMMA?

    Graduation is this Friday

    Graduation is this Friday night can’t wait. Just wish this throat pain would go away. I made it through treatment ok and now this. I want to feel me again!!!

  • Dean54
    Dean54 Member Posts: 160 Member
    #11
    Good to hear from you Charlene

    I got thru pretty much like you did but didn't have the skin issues for some reason. I hate to say it but I'm 7 MONTHS post and I still have very little taste and most all food is nasty to me except for some types of soup. Maybe you'll get lucky in that dept and get your taste back.

    I feel good tho, have plenty of energy, still have some mucous and I think part of the problem eating is realted to the dry mouth we all seem to have and I'm sure that is permanent. Glad to alive but so wish I could enjoy eating again but sometimes that is the price we pay. Good luck.

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #12
    Charmit said:

    Sprint Car Dide I do not have

    Sprint Car Dide I do not have that cream where can it be purchased? Feel more crappy after the treatment then during well started feeling it the last few days. Holding ourt hope some normal will return ASAP!!

    Charmit

    I would ask your Radiation Oncologist to write you a script for it. It is also called Silver Sulfadiazine 1% Cream as well. It is a game changer for sure. Its is mess to use, but I would use a tongue depressor to apply to any open or sore areas externally. Try not too double dip. Then I would use a roll of Kling gauze just to keep from getting it everywhere. Do no be alarmed if when you take the gauze off it looks slightly yellow. The Slivadine Cream kind of melts like butter after application.

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 384 Member
    #13
    My experience is the first

    My experience is the first thing you need for recovery is patience.  At 18 months I am back to 99%, and the rest may have gone just because of age.  Normal once again includes travel pretty much anywhere, including by sailboat and whitewater raft.  Some strength is gone probably forever, but so is 40 pounds, any regaining of which is fanatically resisted.  Dry mouth is a subject of management technique, this week I'm using Xylimelts, last week was Pur lozenges, I own many nalgene waterbottles which have an intrinsic ability to disappear at will.  Taste is full range except for when it's not. I was out and active at 6 months, but the level of confidence at 18 months is far greater.  It was a harder mental hit than I thought originally.

    Even for feeling generally pretty good, normal health events like colds and test results carry ominous implication that so far have been totally in the realm of imagination.  A head cold generates extra phlegm, a huge number of things can add tiny amounts of blood to your stool.  I've spent at least two weeks contemplating new forms of cancer from both, both were eventually proven totally non-cancerous.  But, as you are now aware, preventative medicine is a good thing.   I seem to recover slower from minor health things, but never much paid attention to minor health things before so could be completely wrong. 

    It will take longer than you think or want, but eventually you do get your life back.  Even tho my post-treament docs tell me my recovery is probably complete and successful I now suspect there will always be some element of doubt that it's finally over.

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member
    #14
    You made the treatment

    Now comes the recovery and it is a slow process so you will just need a lot of patience.

    Accept the things you cannot do and you will be able to after while.

    Skin pain and breakdown you should be able to use something topical to help but it is mainly healing time.

    Sores in your mouth are they from rads?

    I had THRUSH A COUPLE TIMES in my mouth AND I BELIEVE THEY GIVE YOU A 10 DAY ANTIBIOTIC FOR IT.

    I think you will see white patches in your mouth if you have it.

    From the early start of treatment they gave me mouth and jaw exercises to do to keep you mouth opening and functional.

    Also they gave me swallowing exercises to do because if you are on a feeding tube and not swallowing you will forget how.

    So even if you are not swallowing these exercises are putting you through the motions.

    They stressed these things.

    When you think of cancer treatment recovery think in months not weeks your body will heal.

    Good luck-God Bless

     

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