10 months out

Starzzy
Starzzy Member Posts: 11
in Head and Neck Cancer #1

Hi, I am 10 months post radiation treatments after having a hemiglossectomy with tongue reconstruction from my wrist along with node dissection bilaterally. This was my second surgery for tongue cancer. The first one did not require any treatments after surgery. I'm no longer on pain meds. My problem is with eating. I had a gtube placed in my stomach at the time of surgery. I am still doing feedings with formula three times a day. I can eat purred soups, some puddings and yogurt and applesauce, although it is hard. I've had 2 swallowing tests which show a minor improvement. I've read so many blogs where most people get their tubes out within 8 weeks post radiation therapy. At this point, I feel like I will never get this tube out. My mouth is always dry but I have very thick phlegm. Has anyone else had the same issues as me and if so, does it get any better?  Thanks for letting me "vent"! 

 

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    Welcome

    Starzzy,

    Welcome to the H&N forum, where we almost all share some degree of side effects similar to you. To make it a heavier burden, you have had to travel this road twice.

    Your diet sounds like you are having a rough go of it.  All I ever suggest (if everything is ok) is to try everything and often.  It is made very difficult with your present inability to eat.  Has your team recommend you try other foods or is your condition not allowing experimentation?  I was satisfied to have a limited diet for 7 months, but it was just awful feel and taste, no taste of food which held me back.

    Always, feel free to vent, we don’t want to hear about a H&N member blowing up on the news.

    Matt

  • soonermom
    soonermom Member Posts: 155
    #3
    Keep trying

    My husband is having the same challenges post radiation.  All I can do is echo Starzzy.  Things he could not even consider eating one day, he would get down a day, or week or month later.  He still has a very, very limited range of foods he can successfully eat but it is getting better at the speed of a slow moving glacier:). Yes, I read the posts of those making faster progress and I am happy for them, it has just not been what he has experienced.  Hang in there and keep trying.  

  • Starzzy
    Starzzy Member Posts: 11
    #4
    My problem is I still cannot

    My problem is I still cannot propel the food back far enough to go down with the amount of thick mucas that I have. I also have a slight impingment w/o aspiration that makes me still cough and choke. I have tried other foods pureed that I can't get down. I still have lots of swelling in my neck and face that lymphedema massage only helps a little. Speech is going ok but still have my bad days. Speech therapy is helping with that. Thanks so much for the support! It is good to see what others have to say. 

  • Engelsa
    Engelsa Member Posts: 50
    #5
    All of these H&N cancers are different

    Starzzy

    Please do not get discouraged. We have this forum for H&N cancer, which is awesome. However, each of these cancers are very different. The recommended treatments are also diverse. Combine this fact with radiation variations custom made for each patient and the differences are endless.

    I firmly believe that every person who battles this monster is a super hero.

    Please take a moment to celebrate your courage, strength, and fortitude.

    H&N cancer treatment is known to be one of the hardest to endure. 

    I see that you are still fighting and I am extremely proud of you. I am impressed with each warrior I have encountered on this site. 

    Please know that to me you are a hero who makes the way for the future and those that will have to follow.

    The head and neck are small sensitive areas that house the bodies most intricate workings. The radiation can take a significant toll. I firmly believe this is why each warrior has their own pace to find a new normal.

    Sara

     

  • Bobby_Lee
    Bobby_Lee Member Posts: 25
    #6
    Try this. It worked OK for me

    Try this. It worked OK for me. Not the best but it helped a little. It kept my lips from sticking together and tongue moist. Hope you get through this fast. https://www.walmart.com/ip/Biotene-Dry-Mouth-Moisturizing-Mouth-Spray-Gentle-Mint-Flavor-1-5-oz/10448044?

     

  • Starzzy
    Starzzy Member Posts: 11
    #7
    Bobby_Lee said:

    Try this. It worked OK for me

    Try this. It worked OK for me. Not the best but it helped a little. It kept my lips from sticking together and tongue moist. Hope you get through this fast. https://www.walmart.com/ip/Biotene-Dry-Mouth-Moisturizing-Mouth-Spray-Gentle-Mint-Flavor-1-5-oz/10448044?

     

    Hi Bobby, I've tried this and

    Hi Bobby, I've tried this and all biotene products. They do not work for me. My tongue burns with anything with mint or spices in it. For a while the only thing that worked was gargling with salt and baking soda but that doesn't even work now. I always feel water-logged cause I'm constantly having to take sips of water. 

  • rsp
    rsp Member Posts: 103 Member
    #8
    Dry mouth

    Starzzy- My husband was in the same boat as far as the biotene products.  His tongue also burns when tasting mint or even the slightest spice.  He did not have a peg tube and lost 90 pounds.  He is 7 months post for SCC on base of tongue.  No surgery, just radiation and chemo. Eating is still limited to eggs, jello, soups, and just recently... pasta with very little sauce.  No red sauce, just alfredo.  Still drinking milkshakes with High Calorie Boost twice a day.

    Some wonderful person on this site mentioned Stoppers4  for dry mouth.  I ordered it on Amazon.  He can use it, and said it is better than the Biotene.   He still struggles with dry mouth, and a water bottle goes with him EVERYWHERE.

    Best of luck to you!

  • Starzzy
    Starzzy Member Posts: 11
    #9
    rsp said:

    Dry mouth

    Starzzy- My husband was in the same boat as far as the biotene products.  His tongue also burns when tasting mint or even the slightest spice.  He did not have a peg tube and lost 90 pounds.  He is 7 months post for SCC on base of tongue.  No surgery, just radiation and chemo. Eating is still limited to eggs, jello, soups, and just recently... pasta with very little sauce.  No red sauce, just alfredo.  Still drinking milkshakes with High Calorie Boost twice a day.

    Some wonderful person on this site mentioned Stoppers4  for dry mouth.  I ordered it on Amazon.  He can use it, and said it is better than the Biotene.   He still struggles with dry mouth, and a water bottle goes with him EVERYWHERE.

    Best of luck to you!

    Thanks for the recommendation

    Thanks for the recommendation. I will try it. I still have issues with the feeling of a ball or something in my throat which makes it feel like it is swollen. The mucus doesn't help either. Does your hubby have these issues  as Well? 

  • rsp
    rsp Member Posts: 103 Member
    edited July 2017 #10
    Throat problems

    My husband said it does not feel like he has a ball in his throat.  However, he does have lymphedema really bad in his neck.  It looks like he has a large lump sticking out of his neck in the front.  He has been seeing a lymphedema therapist.  She massages his neck, and by the end of the hour, the lump is gone.  It returns rather quickly once he does any type of exercise (like mow the lawn).  He now has a lymphedema vest and headpiece he has to wear for 32 minutes every day.  Others on this site say the lymphedema will go away... so far, no sign of that...

    Have you discussed the feeling of a ball in your throat with the speech pathologist?  Have you had a swallow study yet?  My husband is going for his second swallow study on Monday.  When he had his first swallow study, they told him he could eat whatever he wanted... well, that didn't happen. Like I said in a previous post, he is still very limited with what he can eat.  I am anxious to see what they tell him on Monday. 

  • Starzzy
    Starzzy Member Posts: 11
    edited July 2017 #11
    rsp said:

    Throat problems

    My husband said it does not feel like he has a ball in his throat.  However, he does have lymphedema really bad in his neck.  It looks like he has a large lump sticking out of his neck in the front.  He has been seeing a lymphedema therapist.  She massages his neck, and by the end of the hour, the lump is gone.  It returns rather quickly once he does any type of exercise (like mow the lawn).  He now has a lymphedema vest and headpiece he has to wear for 32 minutes every day.  Others on this site say the lymphedema will go away... so far, no sign of that...

    Have you discussed the feeling of a ball in your throat with the speech pathologist?  Have you had a swallow study yet?  My husband is going for his second swallow study on Monday.  When he had his first swallow study, they told him he could eat whatever he wanted... well, that didn't happen. Like I said in a previous post, he is still very limited with what he can eat.  I am anxious to see what they tell him on Monday. 

    The feeling of a ball is new

    The feeling of a ball is new to me and I will discuss with my doctor at my upcoming follow-up appt. I think it may be related to lymphedema swelling as well. I, like your husband, have a pretty good size lump as well. I have a compression mask that I wear at night but does not seem to help much. The massages do work wonders but only for a short while. I have had 2 swallowing tests and all I was approved to eat are honey-thick liquids. My speech therapist will order a new test once I have proven I can eat more items. I am now up to about 2-3 cups of pureed soup, pudding and 6 glasses of 8oz waters by mouth so hopefully soon I will have another test! I want this gtube out so bad! I really wish your hubby good luck on his swallowing test on Monday and that it is a good outcome for him!

  • Raddude
    Raddude Member Posts: 84
    #12
    This helped my dry mouth and still does

    https://www.amazon.com/gp/product/B00CJ9Z3DE/ref=oh_aui_search_detailpage?ie=UTF8&psc=1 

  • brya3289
    brya3289 Member Posts: 6
    #13
    Starzzy said:

    Hi Bobby, I've tried this and

    Hi Bobby, I've tried this and all biotene products. They do not work for me. My tongue burns with anything with mint or spices in it. For a while the only thing that worked was gargling with salt and baking soda but that doesn't even work now. I always feel water-logged cause I'm constantly having to take sips of water. 

    Have they tried giving you

    Have they tried giving you (what they called it, not me) the "Magic Mouthwash"? It's a mix of lidocaine, benadryl, and Maalox that really helped soothe my mouth such that I could take, hold in my mouth for a bit, let take effect, and then at least tolerate trying to eat for 30 mins or so.  Otherwise I experienced the same pain of even trying to use the Biotene products.

  • Starzzy
    Starzzy Member Posts: 11
    edited July 2017 #14
    brya3289 said:

    Have they tried giving you

    Have they tried giving you (what they called it, not me) the "Magic Mouthwash"? It's a mix of lidocaine, benadryl, and Maalox that really helped soothe my mouth such that I could take, hold in my mouth for a bit, let take effect, and then at least tolerate trying to eat for 30 mins or so.  Otherwise I experienced the same pain of even trying to use the Biotene products.

    I've tried the biotene

    I've tried the biotene products along with others that do not help. My dentist recommended a product called neutrasal that is a RX. I will have my surgeon take a look at the literature to see if this may be tried with me during my appt this week. 

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