6 months post and still have some questions

Darkdancer333
Darkdancer333 Member Posts: 115 Member
edited October 2018 in Head and Neck Cancer #1

Im 6mos post and I  am still dealing with mucus and having trouble eating foods without chasing it down with water. Doctor said this is normal, and that people are different. 

I know when I went for my first scope he said pet scan wasn't clear to see if the tumor was gone. Once he scoped I was clean. I still wonder because of the mucus, coughing, and difficulty 

getting food down. I still have inflammation under my chin, usually morning the worse look like a bull frog. 

I eat regular food now, just as before cancer but wondering when my throat will ever expand. 

I still can't gain weight.. when i was on the feeding tube i weighed 140. Now that there is no tube i am at 130. My ideal weight would be 145. 

Hearing still poor, because of the mucus and inflammation i think. 

I eat a lot of Baja Bowls and Wet burritos from Taco Del Mar. Weird but mexican food goes down the easiest. 

I still have dry mouth but it only comes at night and I rinse perhaps twice a night. 

My main concerns is the inflammation under the chin, food going down and my inability to gain weight. 

i know we are all different in our recovery but was wondering if any had the continous problems i mentioned..

 

Doctors results

 

 Index findings:

1. There is faint residual activity in the region of a previously noted midline base of tongue mass with maximal SUV 3.2. Previous maximal SUV 16.6. 
2. Right level IIa lymph node series 3 image 37 measures 1.4 x 0.9 cm with maximal SUV 3.7, there is a new peripheral rim of calcification. On the prior PET CT this measured 1.9 x 2.8 cm with maximal SUV 5.2.

There is intense activity in the genioglossus tongue muscle located more anteriorly than the primary mass. This may be physiologic or inflammatory. There is also intense activity in the right greater than left neck muscles, likely also either physiologic
or inflammatory.

Thx

Bruce

 

Comments

  • Dean54
    Dean54 Member Posts: 160 Member
    #2
    Bruce I have the same thing

    The only thing I can eat without chewing up and swallowing with water is soup and I pretty much agree about Mexican food as between the grease and sauces they use, it doens go down good even if I can't taste it much.

    I also have the swelling in the morning, can't gain anymore weight, still have dry mouth, and cough like crazy if I try and talk to much.

    Would assume after almost a year these side effects are probably permament.

  • bugsyboy
    bugsyboy Member Posts: 39
    #3
    Things Keep Changing

    Hiya Bruce,

    A few things I'd like to suggest if you're not doing them already.  

    Baking soda/salt water solution several times a day to help your mouth get pH back where is needs to be.  In addition, I found a little gargle helped with mucus and residual pain.

    Neck exercises help with swelling and mobility of your neck.

    My weight came back slowly, but it did come back.  Don't worry about getting to 145.  Take it one day at a time and you will get there.  Keep eating foods you have a taste for.  At first it was grilled cheese and chocolate milk.  Then my tastebuds changed and it was something else.  Milkshakes used to be good, but not so much now.  Now I enjoy spicy foods more than ever.  Keep eating, the weight will come back.

    I'm just over four years out and I still use the baking soda/salt water solution, though just 2x a day now.  And I still do neck exercises several times a day.

    Best of luck.

    Bugsy

  • bugsyboy
    bugsyboy Member Posts: 39
    #4
    Dean54 said:

    Bruce I have the same thing

    The only thing I can eat without chewing up and swallowing with water is soup and I pretty much agree about Mexican food as between the grease and sauces they use, it doens go down good even if I can't taste it much.

    I also have the swelling in the morning, can't gain anymore weight, still have dry mouth, and cough like crazy if I try and talk to much.

    Would assume after almost a year these side effects are probably permament.

    They're not Permanent

    Dean,

    At one year post my body and tastebuds were still changing.  I wouild not assume where you are now is where you will be next year.  Yes, I still keep Biotene spray in my pocket and a bottle of water with me wherever i go and I'm just over four years post.  But I'm a lot better now than I was just one year post.  Hang in there.

    Best of luck.

    Bugsy

  • Darkdancer333
    Darkdancer333 Member Posts: 115 Member
    #5
    thx bugsy in a way im lucky

    thx bugsy in a way im lucky my taste about 90% everything smells and tastes fine its just my appetite is much less and I dont eat as much which drives my wife crazy lol

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    #6
    Darkdancer be Patient

    This is a recovery that is measured in weeks and months, not days and weeks. I have never forgotten what my Radiation Nurse said to me as she briefed my wife and I as we were at the start of treatment. You know before it ever starts they sit you down and tell you the details of what is involved. She said, "You might as well figure this whole treatment and recovery will be a year of your life to deal with". Recovery is a slow process and some things you will not really notice outright but it will just occur to you "hey I don't need this med anymore or my mucus seems a lot less etc.

    Like Bugsyboy said if you have the mucus keep using the salt and baking soda mix rinsing your mouth out as many times a day as needed, rinse, rinse, rinse, spit spit spit as many times as needed it will make you feel better till someday you will realize-hey the mucus is gone.

    As far as having trouble eating you may always have to sip something with your food to make it easier to swallow and make up for less saliva post treatment I always have something to drink handy or sip anyway and when I am out I use Spry or Orbit gum to keep saliva moving. Pick gum with Xylitol in it and in the list of ingredients on the bottle or pack the higher or closest the listing of Xylitol as an ingredient to the beginning of the ingredients list is the more Xylitol it has in it.

    The inflammation under your chin is probably lymphedema as your lymph nodes are not draining properly. Ask someone on your cancer team to direct you to a person who does lymph massage. I went for several sessions and they massage and work the areas around your neck get your lymph nodes draining again and will give you exercises/techniques to do at home so after a bit you don't have to keep going back just do them at home and after awhile this problem will be gone.

    Sounds like you had a clear scan and a scope as far as what I read you saying I really don't fully understand the Index Findings.

    As far as food going down your throat probably took a beating from the radiation and is somewhat shrunken now and not as flexible as pre-radiation. You may want to consider throat dilations where they insert a dilator or expander and slowly expand your throat a little bit at a time as to avoid tearing anything. I had difficulty getting things stuck, swallowing, and taking most pills and I had 4 (four) throat dilations and it made a big difference.

    As far as dry mouth at night, you may want to consider a product called Xylimelt's. They are discs you put between your cheek and gum or against your teeth and the one side is designed to adhere to your gum or tooth and will stick there and slowly dissolve overnight and relieve your overnight dry mouth. I believe Matt on here says he even puts 2 in every night.

    I hope this helps as most if not all of us on here experienced what you are going through.

    The products I use many times have to be bought online as drugstores and regular stores do not carry them but that is ok in a way because sometimes you do not always feel like going out. Although lately, my local CVS store has started carrying the Xylimelts. I use Squigle Toothpaste with the fluoride, Spry or any over the counter gum with Xylitol in it and the Xylimelts as some of my post-cancer weapons. 

    Hang in there, be patient, stay strong and God Bless-Russ

     

     

     

     

     

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