It's getting harder

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Chicklette
Chicklette Member Posts: 225
in Head and Neck Cancer #1

Well, my husband is still doing really well, but the side effects are starting to take hold.  He is in week six of treatment.  He is getting his sixth chemo as I write this.  He has completed 26 of 36 rads.  Overall he is doing great.  Up until a few days ago he was eating a fairly normal diet.  Then seemingly overnight he started to choke a lot on small pills and had super thick mucous.  It's generally hard to swallow.  Well, at his visit today, the doctor told us he has a classic case of oral thrush.  So, we are picking up a prescription for that along with some liquid oxycodone.  He was told to take oxy 1/2 hour before eating.  He's also been using the magic mouthwash.  Once the thrush clears up, the doctor said that eating should be much easier.  We are in the home stretch.  One chemo and 10 rads to go!

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  • soonermom
    soonermom Member Posts: 155
    #2
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    Thrush

    We had multiple bouts of thrush.  Please be sure to ask them to look again after your meds end.  Our hardest weeks were the two weeks after treament ended.  Thrush AGAIN was part of that difficulty.  Powerful postive thoughts for the last leg of your journey.  

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    #3
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    I repeat my recommendation

    I repeat my recommendation for an oral gel named BioXtra to help with the Thrush.  You can only get it thru Amazon in the US, and it ships from Canada and takes about two weeks before it arrives.  It was the only thing that had impact, and it finally cleared it up.  

    I tried Nystatin/Diflucan and neither did anything.   I talked about this with my chemo oncol today, and he is going to do a mini-trial with it on H&N patients in his practice (it is not 'folk' medicine, and in Canada and Europe it is over-the-counter and competes with Biotene).   In that regard, there is a side-effect from radiation that looks like Thrush (same whiteish coating), but isn't, which may be what I had, and why anti-fungals like Nystatin had no effect.  Other than being an oncol, the only way to tell the two cruds apart is to take a sample and do a culture.  

    Be careful on price, there are some outlets that charge $40 per tube.  I have been paying $24 for 3.

    https://www.amazon.com/gp/product/B019CRP9XY/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1

  • Chicklette
    Chicklette Member Posts: 225
    edited June 2017 #4
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    AnotherSurvivor said:

    I repeat my recommendation

    I repeat my recommendation for an oral gel named BioXtra to help with the Thrush.  You can only get it thru Amazon in the US, and it ships from Canada and takes about two weeks before it arrives.  It was the only thing that had impact, and it finally cleared it up.  

    I tried Nystatin/Diflucan and neither did anything.   I talked about this with my chemo oncol today, and he is going to do a mini-trial with it on H&N patients in his practice (it is not 'folk' medicine, and in Canada and Europe it is over-the-counter and competes with Biotene).   In that regard, there is a side-effect from radiation that looks like Thrush (same whiteish coating), but isn't, which may be what I had, and why anti-fungals like Nystatin had no effect.  Other than being an oncol, the only way to tell the two cruds apart is to take a sample and do a culture.  

    Be careful on price, there are some outlets that charge $40 per tube.  I have been paying $24 for 3.

    https://www.amazon.com/gp/product/B019CRP9XY/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1

    Thank you for the advice

    We are going to try the diflucan first, and if that doesn't help, I will look inot this stuff.  Right now, his throat is so swollen that the doctor can't tell if he has thrush on the base of the tongue or not.  Only 8 more rads to go!  Amazingly, my husband is still eating things like pasta and other soft foods, although he did lose 6 pounds last week.  Still no PEG.  He might just make it to the end without needing one.   Here's to hoping!

  • Chicklette
    Chicklette Member Posts: 225
    #5
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    soonermom said:

    Thrush

    We had multiple bouts of thrush.  Please be sure to ask them to look again after your meds end.  Our hardest weeks were the two weeks after treament ended.  Thrush AGAIN was part of that difficulty.  Powerful postive thoughts for the last leg of your journey.  

    Thank you

    We can use all the positive energy we can get.  I still think he is doing amazing considering all he is going through.

  • SuzJ
    SuzJ Member Posts: 427 Member
    #6
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    Good Luck!

    Unfortunately, the 3 weeks or so after he's done will be worse, but at some point, there will be a day where you'll say "that wasn't as bad as yesterday" and so on.

    One day at a time, nearly there, hang in :)

  • Andy13460
    Andy13460 Member Posts: 115
    edited June 2017 #7
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    Good luck Im at about the same position

    Good luck heading to the finish line about the same time 1 more chemo on Wednesday and 8 rads left. No PEG still eating soft food and liquid food called Fortisip (300 cal in 125ml) lost 2lb in weight since the start, pain meds liquid Solpadol, Baking soda mouth wash and magic mouthwash are working well.

    The Fortisip has been a life saver for maintaining a balanced diet and correct calorie intake when I havent been feeling like eating.

  • Chicklette
    Chicklette Member Posts: 225
    #8
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    SuzJ said:

    Good Luck!

    Unfortunately, the 3 weeks or so after he's done will be worse, but at some point, there will be a day where you'll say "that wasn't as bad as yesterday" and so on.

    One day at a time, nearly there, hang in :)

    So I've Heard ...

    I'm not looking forward to the "worse" part, but it will be nice to know he is not still having all the chemicals and radiation dumped into his body.  And it will be nice to have him home.  He is currently staying with his daughter during the week since she lives much closer to Boston.  He comes home on the weekends.  So, he will be home tonight and will go back down on Monday.  We are down to single digits.  After today, there are 7 more rads to go.  :)

  • Chicklette
    Chicklette Member Posts: 225
    #9
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    Andy13460 said:

    Good luck Im at about the same position

    Good luck heading to the finish line about the same time 1 more chemo on Wednesday and 8 rads left. No PEG still eating soft food and liquid food called Fortisip (300 cal in 125ml) lost 2lb in weight since the start, pain meds liquid Solpadol, Baking soda mouth wash and magic mouthwash are working well.

    The Fortisip has been a life saver for maintaining a balanced diet and correct calorie intake when I havent been feeling like eating.

    Fortisip

    Hi Andy,

    I have not heard of Fortisip.  Not sure if they have it in the US.  I'll look it up.  My husband has been drinking his own shakes and also Boost Plus ... it has 360 calories in 8oz.  He was told to primarily drink that, but to also eat oher foods.  We were told that eating at least 1/2 cup of something the consistency of yogurt / pudding twice a day will help prevent scarring.  He is still eating soft foods, too, like macaroni & cheese and other things.  He lost 6lbs last week so he really needs to be careful not to do that again or they will try to push the PEG tube on him.  We want to avoid that if possible since it's another surgery. 

    It sounds like you are doing well and are almost finished!  You are only one day behind my husband.  :)

    ~Chicklette~

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