nasopharyngeal carcinoma stage 4 - making life easier

Conquerthis23
Conquerthis23 Member Posts: 15
in Head and Neck Cancer #1

Hi All,

This forum is a light in a dark tunnel. I'm so grateful to everyone who takes the time to post and share information on their experiences to help others. My mom just got diagnosed with Stage 4 nasopharyngeal carcinoma. We are all very worried about her and want to make sure that we can give her the best care possible. I've been speaking with Phrannie51 and she encouraged me to post so that everyone can benefit.

I had a quick question, my mom has just finished her 2nd round of radiation and she is already feeling the dry throat. (They have her on the typical 7 week radiation + 3 cisplatin followed by 3 month adjuvent chemo of cisplatin+5u)  I've heard good things about Manuka honey, has anyone else here tried that as a way to coat the throat to stop the dryness? Are there any other alternatives to deal with the dry throat?

Thanks so much in advance everyone, this forum is godsend

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Hi there!! :)

    I'm so glad you posted here on the main board.  I did use Manuka honey at first, before my mouth got really dry....I'd lick it off the spoon, and let it disolve in my mouth, then swallow it.

    Right now, before her mouth gets tender, Stoppers 4 (a spray found on drugstore.com)....or Xylemelts (lounges amazon.com).....will both ease the dryness.  I couldn't use them with the 5FU, because my mouth stung too much....but for the beginning, and then after treatment is over, they are very effective. 

    p

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #3
    Welcome

    It is great that you are being proactive for your mom.  If you know Phrannie you are in good hands.  I just kept sipping water, knowing that it wasn't going to do anything but it wasn't going to hurt me either!  More will chime in I am sure.  I will be gone for a few days, more treatment.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    help is on the way or tips & tricks

    C23,

    Welcome to the H&N forum, I am sorry for your Mom’s situation, but I am pleased you contacted Phrannie as she has firsthand knowledge with this particular type of cancer.

    As for dry mouth during treatments, it is rough and unlike any dry mouth a normal person experiences. For me the sore mouth, tongue and throat were more of the day to day issue for which I used Magic Mouth Wash.  I never tried the honey for dry mouth, but really doubt its ability to aid the condition, if I could even swallow it.  Per recommendations from the H&N crew I drank lots of water (and have been for the last 21 months).

    I am getting ready for bed right now and just popped a couple of Xylimelts, they work very well for me since treatment.

    I would say to your Mom “try anything” that helps.  Learning to deal with the side effects is half the battle.

    Matt

  • dunedintech
    dunedintech Member Posts: 90
    #5
    Honey

    I used Manuka Honey throughout my treatment and while I can't be sure if it worked to soothe the throat, it tasted nice until the taste buds went awol. Personally I found water and bicarb rinses were the best for keeping things lubed. I read here that milk worked for some with regards to lube.

    I hope your Mum manages to find something that works for her!

     

     

     

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #6
    2nd round

    I, too, had side effects starting the SECOND day I had rads.  The onc couldn't believe it.  What everyone else already has said is the best advice.  I didn't have chemo, just rads, but I can tell you this...these wonderful people on CSN are a God send.  They helped me SO much!  I am forever grateful to have found this site.  Welcome and it's so great that you're looking after your mom so much :)  You both will be added to my prayer list! 

  • Conquerthis23
    Conquerthis23 Member Posts: 15
    #7
    TracyLynn72 said:

    2nd round

    I, too, had side effects starting the SECOND day I had rads.  The onc couldn't believe it.  What everyone else already has said is the best advice.  I didn't have chemo, just rads, but I can tell you this...these wonderful people on CSN are a God send.  They helped me SO much!  I am forever grateful to have found this site.  Welcome and it's so great that you're looking after your mom so much :)  You both will be added to my prayer list! 

    Thank you for all the

    Thank you for all the wonderful ideas everyone. I'm going to have her try milk (Which she hasn't had in almost 40 years, similar to Phrannie). How often did you guys use the L-Glutamine for swallowing? I just wanted to know the max amount of TSP/TBSP she can have of it per day.

    TracyLynn72, i'm terrified that because she is already feeling the effects after the second day that it will only get harder from here. Were you able to finish your entire course of treatment?

  • Conquerthis23
    Conquerthis23 Member Posts: 15
    #8
    phrannie51 said:

    Hi there!! :)

    I'm so glad you posted here on the main board.  I did use Manuka honey at first, before my mouth got really dry....I'd lick it off the spoon, and let it disolve in my mouth, then swallow it.

    Right now, before her mouth gets tender, Stoppers 4 (a spray found on drugstore.com)....or Xylemelts (lounges amazon.com).....will both ease the dryness.  I couldn't use them with the 5FU, because my mouth stung too much....but for the beginning, and then after treatment is over, they are very effective. 

    p

    Phrannie, we don't have

    Phrannie, we don't have Stoppers4 in Canada so I had to go with Mouth Kote. Hopefully it works the same way!

  • phrannie51
    phrannie51 Member Posts: 4,716
    #9
    Conquerthis23 said:

    Thank you for all the

    Thank you for all the wonderful ideas everyone. I'm going to have her try milk (Which she hasn't had in almost 40 years, similar to Phrannie). How often did you guys use the L-Glutamine for swallowing? I just wanted to know the max amount of TSP/TBSP she can have of it per day.

    TracyLynn72, i'm terrified that because she is already feeling the effects after the second day that it will only get harder from here. Were you able to finish your entire course of treatment?

    I didn't use L-glutamine

    until I couldn't stand anything else in my mouth....that was after radiation was over.  I'd mix approximately 4 tablespoons for a one liter bottle of water....and sip on that.....as far as I know there isn't a limit on how much a person can have per day.  As long as her mouth doesn't sting, but is suffering the effects of dry mouth, I'd think milk would be better.  It leaves a layer of wet behind....plus she can use the calories.  Making a smoothie with milk or half and half...plus 1/2 banana, a couple scoops of protein powder, little ice cream...will also leave a layer of wet, plus a good bunch of calories.  Right now, all the calories she can take in will be invaluable down the road. 

    What did the Onc say about the Mugard?

    p

  • hwt
    hwt Member Posts: 2,328 Member
    #10
    phrannie51 said:

    I didn't use L-glutamine

    until I couldn't stand anything else in my mouth....that was after radiation was over.  I'd mix approximately 4 tablespoons for a one liter bottle of water....and sip on that.....as far as I know there isn't a limit on how much a person can have per day.  As long as her mouth doesn't sting, but is suffering the effects of dry mouth, I'd think milk would be better.  It leaves a layer of wet behind....plus she can use the calories.  Making a smoothie with milk or half and half...plus 1/2 banana, a couple scoops of protein powder, little ice cream...will also leave a layer of wet, plus a good bunch of calories.  Right now, all the calories she can take in will be invaluable down the road. 

    What did the Onc say about the Mugard?

    p

    Welcome

    Sorry you had the need to find us for your Mom. I had sores on my lips week 1 and they stayed until tx finished but my other side effects prettty much came and went, some much milder than others. Milk and chocolate milk helped me too. Not sure if you have what we call magic mouthwash here but it can be a lifesaver. It is a concoction mixed up at the pharmacy of Maalox,Benadryl, Lidocaine and Nystatin. There are still days when all the water in the world won't relieve my dry mouth but MMW helps. I've also noticed when I eat something it helps on those really bad days.  

  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Hi

    Sorry to hear this about your Mon but you are in the right place for help. I too had NPC and you can get the Victory over it. Just take care of your Mom as she will need you to help support her to the finish line.

     Keeping you both in Prayer

    Hondo

  • OFD272
    OFD272 Member Posts: 5
    #12
    Biotine mouth rinse works

    Biotine mouth rinse works somewhat.  My last radiation in my head/neck area was in February and I still find myself carrying a bottle of water around with me.  It does get better with time. 

  • corleone
    corleone Member Posts: 312 Member
    #13
    Radiation side effects

    I finished the radiation treatment 1 year ago (same NPC diagnosis, except that I was stage III; identical treatment – except that the third round of concurrent cisplatin was not administered due to side effects, and later on switched to carboplatin). I live in Mississauga, by the way.

    In my case the radiation side effects started (from day 1) with slight nausea. Later on, dry mouth also added to the panoply of side effects. For that I was using “sinus rinse” that contains both NaCl and bicarbonate along with other remedies already mentioned. Also don’t forget to use a good humidifier.

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