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NPC and Dry Mouth Recovery

jamiemabelle's picture
jamiemabelle
Posts: 6
Joined: Mar 2013

Hello!

So the background info... I am a 28 year old female with nasopharyngeal carcinoma.  I discovered it with two pea-sized bumps on my neck. They kept getting bigger but doctors didn't think anything of it.  Finally, a year after the discovery, a biopsy was conducted, and the pathology reports indicated that the growths on my neck were cancerous and that the suspected tumour was behind my nose. After an inspection of my nose and an MRI, it was concluded that I had NPC.  A day later I was told I was pregnant.  By that weekend, the pregnancy was being terminated as I really needed the cancer treatment, and chemo would be too dangerous for a baby.  Got a feeding tube put in, which was a horrendously painful experience for me, but am now completely dependent on it.

Since December 2012, I have completed 35 radiation sessions, and 3 high-dose chemo cycles of cisplatin.  There has been significant damage to my hearing, so for the last 3 cycles, I was switched to carboplatin.  In addition to the carbo, I have an infusion pump for 4-days that slowly releases yet another chemo drug, 5-FU, into my blood stream.  On the first cycle of 5-FU, I was hospitalized due to severe mucositis (this is NOT the same as mucus buildup, which is another nuisance, but not my biggest monster right now - if you don't know what it is, look it up), and really high fever that nearly wiped me out.  I eventually got desperately needed antibiotics and the mucositis cleared up in a week.  That was hell on earth, despite my understanding that the last 3 cycles would be the easier ones.

I just finished my second last cycle, and the 5-FU was reduced by 25%, and I'll be receiving Neupogen shots for 10 days to boost my immune system, and hopefully avoid severe mucositis and the emergency room this time around.  If all goes well, this will be the same plan for my last chemo cycle next month.

After my 3rd chemo cycle, a few weeks after my last radiation, I was recovering well and my taste started to come back some.  Sweet was first, and some salty.  I was starting to eat broths and soups and even got to cereal.  There was an annoying lingering sour taste, but I was so excited to start eating again, and I really wanted to get rid of the feeding tube.  The dry mouth was the worst.  I was barely producing saliva, and what was left of it was incredibly thick.  Even water wasn't helping get the solids down.  Then my mucositis kicked in I was back to pure feeding tube again.  I wasn't speaking, eating, burping, coughing - absolutely everything hurt.

In order to avoid mucositis this cycle, I am also back to 100% tube feeding by choice, just until I get over the hump and boost my immunity.  I plan to do the same for the last cycle.

January 24 was my last radiation.  Since then, I will have 3 cycles of carbo and 5FU.

What I'm trying to figure out is when the dry mouth will start to get better, if it every does, and if taste does return to normal???  Will there be a day my feeding tube can be removed, and when will this dry mouth end.  I have all the biotene, rinsing with baking soda washes, chewing gum when I can, and drinking lots of water.  I even have a week's worth of home hydration after each cycle.  I don't want suggestions on how to replace my saliva, I just want to know if the dry mouth and taste spell gets better, and if so, around when???  Am I slower than the average at healing? Does the clock start after radiation, or after all of my chemo cycles as well?

 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Jamiemabelle,

I might not be the best person to answer but our stories are so close with a 12yr time difference. I too had NPC III at 28 and went through 9 months of living hell exactly like you, a misdiagnoses at first, and really bad peg tube insertion(I have one now for late term side effect and although better its been 4 months and it still hurts and can only wear sports bra no under wire. I did cisplatin all the way through, had severe food aversion orally or in tube and lost a total of 70lbs.

The salty taste of everything goes away, food will taste better. You may like things you didn't and can't stand things you used to love.

Tto answer part 2, dry mouth, were you given any pill in treatment to help protect salvia glands? If so what I am ginna say may be different, as a lot of issues are different from person to person. Chances are you will not ever have salvia the way you are used to, you need to accept it, come to terms with it and work it for you. Before I wasn't allowed food or water since dec, I figured out what size sip of water I needed to take to help break down food when I chewed, and then how much to push it when I swallowed, I was a salesperson, I always had a bottle of water with me, I could only talk so long without taking a sip.

I know its not what you wanted to hear, but that is what I went through, starting at same age, and fighting same cancer.

Any questions please ask, ill answer as honest as I can.

God Bless you sweetheart, but one thing you can be sure of 12yrs out and in 13th year, Surviour, you beat this *****, now embrace the new you.

Rachel

jamiemabelle's picture
jamiemabelle
Posts: 6
Joined: Mar 2013

No pill prior to treatment.

 

I am hoping that with the way they administer radiation these days, there is still hope for me. My cousin had NPC a year ago and has fully recovered.  Taste and saliva, but I wanted to see what others' experiences were like because not everyone is the same.

 

Thank you.

phrannie51's picture
phrannie51
Posts: 3598
Joined: Mar 2012

to the club nobody wants to join.  You have struck pay dirt finding this forum, tho.....you will find support, kindness, and immense knowledge here.....Plus you will find yourself tucked under some very wonderful wings.

I had exactly what you have, and went thru the exact same treatment....only difference being that I had Cisplatin all the way through.  Oh, I certainly remember coming here last July, August and September with the horrible mouth sores from the 5FU....like you, I was suddenly totally tube dependent.  The sores lasting for two weeks, then a week to actually drink my Ensure, only to start the process over again.  I had my last Cisplatin/5FU on August 28th.  When I got my PEG, I thought I must be a wimp, because the damned thing hurt so bad and others thought getting it was a piece of cake.... it was the only time during treatment they actually gave an opiate.

I started getting some taste back about the middle of October.....only for a couple bites, and then taste fatigue would set in.....Like you, tho....I was SO happy to eat real food, even with taste fatigue, I'd finish what was in front of me.... I ate mostly soups, but would slice up French bread, heavily buttered and soak it in my soup.....that seemed to really hit the spot for me in the beginning.

As for the saliva.....I'm still at about 30%.....enough to lick my lips, and I can get to the grocery store or the Dr.'s without taking a water bottle.  If I eat anything solid tho, I have to have lots of water.  I'm still eating mostly soups, and my repetoire has greatly increased.....I make big pots, and pretty much eat them thru the week.  I wouldn't really have to do this, but soup is so much easier to get down.  My taste has improved too.....taste fatigue doesn't set in until maybe the 8th or 9th bite....and some flavors I can taste much longer.....things with vegitables other that potatoes seem to taste good for many bites.  I cannot taste sweet yet, tho...Cry...and I'm an an icecream addict.  I eat 1/2 gallon every week just to check and see if it's back....LOL.

My experience is just that....MY experience.  Things come back in degrees....at first it's barely noticiable (wouldn't it be fun if everything...saliva and taste....suddenly all came back?)  What a rush that would be......but it's very very slow.....I know things are better right now that they were in January.....and I fully expect them to be even better by June....patience is the name of the game here....so hang in there, sweetie......it IS going to get better.

p

jamiemabelle's picture
jamiemabelle
Posts: 6
Joined: Mar 2013

I guess it will be soup for me for a while post chemo as well... only time will tell.  Thank you.

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

jamiemabelle,

I did look up mucositis, it sounds like a real “butt kicker”.  I hope you are over that.

At 1-year post I can say for me my dry mouth is better.  I still drink water all day and travel with my water bottle.  I have had great success supplementing my lack of saliva with Xylimelt mints.  I can sleep through the night, take a few mile hike or attend a meeting without getting extremely dry mouth. Sorry for the Xylimelt commercial.

I got my feeding tube out at 2 weeks post, but lived on smoothies for 7 months because I could not stand the taste and feel of most foods.  I always was trying to eat I just hated it (and loved my smoothies).  Anyway, the awful food feel went away and the refrigerator doors  flew open and I am back to eating normally (taste buds at about 20% efficiency).

Everything is getting better, but 1-year ago they were far worse.  I wish I could report “alls normal” ahead, but I can’t. 

 

I am sorry for the terrible hand you’ve been dealt at such a young age.  I hope we at the H&N forum can answer your questions, we all agree cancer sucks and figuring out our “new normal” is difficult.

 

Welcome aboard,

 

Matt

jamiemabelle's picture
jamiemabelle
Posts: 6
Joined: Mar 2013

Yes I have mucositis, hasn't completely cleared up yet, but much better than the last cycle.

 

Wow, two weeks post!  I don't think I'll be that fast to take out my G-tube.  Good for you though!  I hate the feeling and taste of most food as well.  I guess only time will tell....

yensid683
Posts: 222
Joined: Apr 2012

Welcome to the site that no one wants to join, but when we do, we find a 'home'

My circumstances are different, but we share similar side effects from chemo/rads.  I was stage IVa, base of tongue with left cervical lymph nodes dx in March of 2012.  one round of induction chemo, (taxitol, cisplatin and 5 FU) and it was discovered that my kidneys were not a fan of cisplatin, shifted to a concurrent chemo/radiation therapy with erbitux and 33 rads.  I had a PEG tube installed before I started radiation treatments and even with the tube and 'drinking' my meals, I lost 40 lbs, but they were pounds that I could afford to lose.

The mega side effects really hit by the end of week 2, killer sore throat, fatigue, loss of taste, loss of saliva, all of the typical nasties.  I don't want to scare you but at the start of week 4, my oncologist let me know that the next two weeks would be the most difficult of all and would continue for two weeks after treatments ended, but then I would find a gradual improvement and I have to say he was right.  Two weeks after rads ended I woke up one morning and didn't feel quite so bad.

Taste started to wake up around 5 weeks after rads, salt was the first thing that came back, followed by sweet.  Bitter and sour were not far behind but because of the lack of saliva, they were too intense to bear.  Swallowing was always an issue, but I kept at it, if you don't you can actually lose the ability to swallow and who wants to live the rest of their lives with 20 or so inches of tubing sticking out of your belly?

Taste recovery is different for everyone, a fellow patient with an almost identical disease process and treatment cycle got salt, sout and bitter back, but not sweet, and he's about at the same stage of recovery.

I didn't start on real solids until around 8 weeks post rads but only with soft foods, I came to hate Campbell's Chicken Noodle soup!  I'm now 8 months post rads and things continue to improve.  I'm able to eat just about anything I want, some tastes are still different, but I can eat them,  Sour items are not the problem they were, there is some improvement in the saliva, but they are still intense.  I've learned the necessary balance between bites of food and sips of water to be able to eat even hot buttered popcorn!

My radiation oncologist said that it would be up to two years of healing time before everything came back, and it appears that he is right so far.  I'm hoping you get past the real nasties, I recall that the days were very long, but surprisingly the weeks went by quicker. 

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

I just want to express my thoughts on your road to recovery.  I too had nasopharyngeal Cancer (NPC), but it was in 1998.  The treatment then is probably different from those undergoing this dreadful disease today.  From what I have been reading, there is nothing but good thoughts for those undergoing treatment nowadays.  I read positive outcomes.

I believe individuals now recover at a different pace, but in the end, they just about fully recover their taste buds and saliva.  I can only relate my experiences from 15 years ago.  I can remember when my taste started to return.  The initial taste were there and soon, it would disappear.  Eventually, it returned but for me, not as full as many others who were treated after me.

The same is true on my saliva.  I do not have good news in this area, but very hopeful for those like you who just went through the treatment process.

Like you, it was at least six months before the doctors realized I had NPC.  My symptoms were different.  I had this constant pain in the back of my head directly in back of my nose.  Later, I started to spit blood.

Although it did take a couple of years, I received the NED results and was very happy.  Even greater news I think is our survival rates.  Despite these after effects, I am just plain happy to still be around and able to communicate on this forum.  You will too.

The very best to you and God Bless

hwt's picture
hwt
Posts: 1821
Joined: Jun 2012

I am about 10 1/2 months post tx (rads & Cisplatin). I tried Matt's Xylimelts and after just one, something seemed to kick in and my saliva problem improved. It's certainly not what it used to be but it is better than it used to be, I no longer have a bottle of water as my constant companion but try to drink as much as possible.

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

hwt , Where can I buy xylimelts ? Just wondering if I can get them at any pharmacy or if I have to order them ?  Sounds like I need to try them . Hope they will help me like they did you ! Thanks

Peggy

Ingrid K's picture
Ingrid K
Posts: 810
Joined: Mar 2011

Peggy

I have only seen the XyliMelts on line.  I get them at www.drugstore.com

I have never seen them in the local pharmacies around here (Chicago).  They DO work quite well.

You should definitely give them a try.

 

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Thank you so much for your reply Ingrid . I am going to try them . Will probably order them tonight. Sure wont hurt to try them. At this point I would try almost anything to get my taste and salavia back !!

Thanks again , Peggy

aprilshower55
Posts: 23
Joined: Mar 2012

I GET MY FROM COSTCO I SPECIAL ORDER THRU THERE PHARM. HOPE YOU

HAVE A COSTCO AROUND YOU, IT IS THE CHEAPEST AS WELL AS THERE

KNOCK OFF ENSURE WHICH I DRINK  COUPLE A DAY FOR CALORIES.

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

oops double post !

kevinr51's picture
kevinr51
Posts: 14
Joined: Nov 2013

Peggy,

i was able to find xylimelts on Ebay cheaper than just about anywhere else i found

jamiemabelle's picture
jamiemabelle
Posts: 6
Joined: Mar 2013

It's ok, I'm way past radiation now - that ended in January, and to be honest, the 5FU and mucositis were far worse. It made radiation feel like a walk in the park.

 

Thank you.

corleone's picture
corleone
Posts: 144
Joined: Jul 2012

I also have NPC, I am now 6 month post radiation and 3 months post last chemo, and got my first NED (no evidence of disease) a couple of days ago. Please check my profile for details.

I was planned initially for the same treatment, but cisplatin was ototoxic (I lost 50% of my hearing) and I didn’t get the 3rd concurrent cisplatin. Also, the adjuvant chemo consisted of carboplatin (less ototoxic) and 5FU.

The saliva hasn’t got back yet (or I would say only 10%) but the taste is almost 80% back (except for the last couple of days, since I got a bad common cold and my taste went completely south, dammit).

The severe toxicity you experienced with 5FU might be explained by a rare enzyme deficiency (please check this older post http://csn.cancer.org/node/229975 )

Be very careful with swallowing, you have to keep doing that, even if you have severe pain, otherwise you might get into trouble later.

I “lost” my g-tube 2 months after the last chemo treatment.

Good luck with your treatment.

 

jamiemabelle's picture
jamiemabelle
Posts: 6
Joined: Mar 2013

Ototoxic, that's a new word for me that I wish I learned before starting.  I've lost 30% of my hearing which is why they switched me to carboplatin.  What a shame...

Congrats on the NED.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

One more NPC here, hang in there is does get a little better as time goes on. You might want to try using something like Stoppers 4; it helps me with the dry-mouth and sleeping at night and through out the day. I tried all the other stuff and it did nothing for me. Another thing you need to be doing is working your Jaw everyday by opening it as far as possible. My Oncal doc did not say anything to me and now all I can open my mouth is about ¾ of an inch. I live on a peg tube and will more then likely have to the rest of my life. The good side of all this is I wake up on the right side of the dirt.

PS: I am sorry to hear you had to terminate your pregnancy because of this crap, but glad to hear you are doing well.

 

God Bless

Hondo

boardwalkgirl
Posts: 261
Joined: Jun 2012

I am almost 8 months out of 35 radiation treatments and 3 rounds of Cisplatin. Saliva is maybe 25%, I take Salagen tablets and they do seem to help.I sleep with a cool mist humidifier every night which helps with the mouth dryness. Taste started coming back after about 3 months and was here at about 50% until maybe 4-6 weeks ago and it seems to have gone on vacation again. Can taste a few things but most things don't taste good. Can't taste sweet at all. I ate thru out all of my treatments and supplemented with tube feedings. I can eat most anything, some things just take more work than others. I believe it will get better but it is discouraging at times. Just keep trying different things, I am always amazed at some of the things I can taste.

Sam999
Posts: 305
Joined: Mar 2012

It is a slow process but it does grt better with time. My favorite for night time is biotine oral balance gel. During day time i use biotine dry mouth gum. The gum used to burn at first for couple of weeks after the treatment.

For food try bland stuff like avocodos. Water melon worked as it was summer time, i could not taste the sweetness for a long time but the coolness helped.

I survived in bolthouse farms arabica coffee smoothie avaialble in whole foods and target and some grocery stores. Make sure you get the high protien one. They also have other falvors but i liked only the arabica coffee at the time.

Sam

CherriBlossom's picture
CherriBlossom
Posts: 44
Joined: Mar 2012

I went throught a very similar situation in 2011.  I was diagnosed with NPC stage 4 and found out I was pregnant.  Pregnancy was terminated so I could be treated with rad, Cisplatin, 5fu and thank god I have been NED since treatment completed.  One of the doctors had said hormone from the pregnancy could have speed up the growth of the tumer in my case since there was no symptom before pregnancy.  Anyway as for dry mouth, the Xylimelts tablets work like a miracle.  You can get them from amazon.  

catfish_58's picture
catfish_58
Posts: 109
Joined: Feb 2013

I haven't tried but I thinkl you can get a free sample of xylimelts by going to this web site http://www.oracoat.com/ i think it cost about $3.20 for shipping,and you'll get a sample of 12 disc just look under the products tab may be worth a shot to try first,Hope you get to feeling better

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