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Mouth Pain

catluver96's picture
catluver96
Posts: 73
Joined: Jan 2013

Hello,

 I just joined the site tonight. This is my first post.

 I had cancer of the tongue that spread to my lymph nodes. August 2012 I had surgery to remove 1/3 of my tongue and the tumor with surrounding lymph nodes. I had 33 radiation treatments and 3 two-part chemo treatments. It was extremely rough to get through.

 I am now 7 weeks post treatment. FINALLY starting to feel much better. I still have mouth sores and stinging/burning pain on the surface of my tongue that are slow to heal and painful. (Thankfully the sore and pain I had in my throat have recently cleared.) 

 I get discouraged and depressed sometimes about my ability to eat. I miss food and eating meals with loved ones. Mainly my diet is Ensure Plus. I sometimes try other liquid to soft foods, but the pain keeps me from eating much. And the lack of taste.

 I know I'm not alone with this, but sometimes feel like I am. Now I know about this group. :)

Thanks everyone,

Vicki

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Welcome to our group.  I am sorry you had to find us, but the people are super nice here.  They understand what you are going throug, give practical advice and are very supportive.  My husband was diagnosed with Stage 4a base of tongue cancer with lymph node involvement in August as well.  Unfortunately he now has Plasma Cell Leukemia.  A horrible twist of luck.  He only completed 14 radiation treatments and no chemo.  He did have davinci robot surgery on the base of the tonguem. Since the PCL diagnosis they have stopped all treatment for the head and neck cancer.  So although I am a frequent person on this site I can't help you too much, but everyone else is great.

CivilMatt's picture
CivilMatt
Posts: 2963
Joined: May 2012

Hi Vicki,

 

Welcome aboard the CSN H&N.  Very sorry you are here but happy to meet you.

 

I am glad your throat is better and expect your mouth and tongue to be improving quickly.

 

Everyone on the H&N forum can identify to some degree with your taste and eating dilemma.  For me I lived happily on smoothies for 7 months before the tide turned for me.  I still do not taste very well, but eat everything.

 

As for family not “getting it” welcome to the club.  I’ve found that only those within these walls understand the no taste, no eat.

 

Wanting to eat, I did join in at my parent’s house every Sunday.  I started with a can of Boost and moved up to 1 or 2 bites of food, then to 3 or 4 bites and finally, back to a full plate plus 2 or 3 glasses of water.

 

It is slow going, but you will get there.

 

By the way, I am stage IVa, scc,bot, hpv+, one lymph node with surgery, rads and Erbitux and 9 months post and feeling fine.

 

Best,

 

Matt

 

Love the cat!

 

catluver96's picture
catluver96
Posts: 73
Joined: Jan 2013

Thank you for the warm welcome and all the feed back. Your words have been comforting and encouraging.

I see a lot of abbreviations for things. What is bot, scc and NED?

About my cat for the animal lovers: Anna was a rescue who lost her right eye at four months of age. Right after her surgery to remove injured eye (with sutures still in place), I adopted her. She is now 16 and 1/2 years old! Doing very well. Smile

~Vicki

katenorwood
Posts: 1829
Joined: May 2012

Hi Vicki !

You can find alot of useful info. on the first listing....super threads....should help you with the abreviations.  Welcome to the gang.    Katie

Vee1
Posts: 59
Joined: Nov 2012

Hello...I am a caregiver, but I rely heavily on this fine crew to get me through my dad's treatment. He's 94, floor of mouth scc, radiation is his treatment.  I can tell you this...the folks here will be by your side every step of the way.  I can't offer anything in the way of "knowing" what you are going through, but just know I will let my dad know he has one more "buddy".

 

By the way...Nice cat! I have two plus a dog...

-V

phrannie51's picture
phrannie51
Posts: 3730
Joined: Mar 2012

All I can tell you is that recovery is slow.....I too was dying to eat something real, I was SO hungry!  The mouth pain goes away.....for some it is far quicker than for others.....but it DOES go away finally!  I'm 4 months out from treatment, and still bump into things that sting, and my taste is at about 20%.....0% after three or four bites....I lived on Ensure plus for 4 months so I can really relate to how tiring that is.  Little by little you'll find things you can handle.  Just hang in there and experiment every few days.

p

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

You are not alone in your inability to eat.  I've been through three different treatments.  Radical surgery impaired my ability to chew and swallow.  Two separate radiation treatments did it even worse.  I'm now almost a year out from my last radiation, and can still only eat soft food.  And I cannot eat enough soft food to get by, so perhaps half my calories are ensure or other liquids.  I don't have mouth pain any more.  That finally settled down a handful of months ago.  But my mouth is tender enough I cannot drink carbonated beverages, or use much in the way of spice at all.  I still go to restaurants, and am sometimes able to order off the menu.  Soup.  Breakfast stuff.  Poached fish.  Mashed potatos.  The improvement is very slow now, and I dont know if I will ever be able to return to a regular diet.  I just returned from a long road trip with my wife.  To accomplish it, I just tossed a case of ensure in the car and off we went.  That way, I'm never at a loss for calories...

 

The best news is I'm functional and I am thusfar NED.  The other stuff, to me, is a detail.  I was emailing to another poster the other day.  He is beginning to make plans to hike the entire length of the Florida trail, over a thousand miles.  And he has run marathons since his treatments.  All of this, with a PEG tube and a permanent tracheostomy.  The point is, don't let this stuff get you down.  Figure your  best workaround and keep on living.

 

Best to you.

 

Pat

CynthiaB1's picture
CynthiaB1
Posts: 6
Joined: Dec 2012

Hi Vicki,

Welcome to the site. I am also new. I had Nasopharyngeal cancer diagnosed in May 2012 and sbusequently had concurrent chemo and radiation and then more straight chemo with Cisplatin and 5 FU. I finished my last rad August 8th and my last chemo Oct. 21st. I, also am still getting most of my calories fron Boost plus. I having a bhard time eating because of the dryness and taste issues. I can relate to your frustration. I miss enjoying food terribly. I do eat a little, but not enough to sustain my weight. I have been told over and over by others who have been there that it takes time and to be patient and perservere and so I do at least most of the time. You will notice things improving slowly. You are not alone but I know how it feels. Nobody understands unless you've been here. There is a certain lonliness that goes with the territory. Have patience and perservere sweetie. You will get there and so will !

God Bless

Cindy

corleone's picture
corleone
Posts: 162
Joined: Jul 2012

Hi Vicki,

I was diagnosed (biopsy) with Nasopharyngeal carcinoma, stage III (T2N2), undifferentiated type, on 14-Jun-2012. I had radiation 70 Gy (2.0 Gy/fraction): 35 sessions (7 weeks, finished on 05-Sep-2012) concurrent with Cisplatin days 1 and 22 (attempted on day 43, but the last dose was not administered due to toxicities (hearing loss ~50%)). Adjuvant (post radiation) chemotherapy: carboplatin (instead of cisplatin that was too toxic for me) on day 1 plus fluorouracil by continuous IV infusion on days 1-4 every 4wk for 3 cycles. Finished chemo on November 26th.

During the treatment phase I had a huge appetite but not able to taste anything (starting with week 3 of radiation until 1 month post radiation), very frustrating. I used to dream a lot about food, during this time. 1 month after radiation the taste for salt started to come back gradually; 2 months post, taste for sweet; 3 months, for bitter. The saliva is only ~10% back, but I was able to eat liquid and semisolid food starting with week 3 post radiation. Now I eat almost any food, solid or not (with plenty of water or tea) and taste I would say %80 normal (except that the taste fades away after a few bytes). I haven’t been using the G tube for the last 3 months, but I am still having it (it will be removed in a few days).

The energy level started to come back (again, key word – slowly) 1 month post last chemo treatment. Now it’s much better (estimate ~70%-80% of normal).

The side effects that are still troublesome are: hearing loss (~50%), xerostomia (dry mouth) and granulation tissue at the stoma (where G tube enters the abdomen) level (makes it painful and messy). The last one will (hopefully) go away in a few days, after the tube removal.

I had an endoscopy (of the nasopharynx and throat) performed 2 weeks ago, everything was normal. I am scheduled for chest CT in February (some hot spots were noticed during the first CT performed before treatment, need to be re-checked) and H&N MRI in March.

That’s pretty much it, in a nutshell.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Hi Vicki,

I think some of the others missed your question about abbreviations.  BOT stands for Base of Tongue which happens to be my origin for cancer.  SCC is Squamous Cell Carcinoma which is my type of cancer and NED stands for No Evidence of Disease which means you are in remission.

 

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

Sorry you have to make this journey but glad you found us. I had numerous bouts of thrush which caused my tongue to burn. A few months ago my doctor gave me treatment in the way of lozangers which was much more convenient and did the trick. I am 7 months out of tx and my tongue still bothers me but is improving. For a long time it felt like velcroe. Today, I can eat a good variety of foods. I would say, my tongue has moved from painful to annoying.  Hope you continue to see improvement.

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

to the club, noone really wants to join, but...here you'll find support and answers. I had de vinci robotic surgery November 2, 2011, to remove my epiglottis , in case you don't know, it's the flap of skin that opens and closes when you eat or drink to protect your windpipe from letting these into your lungs. I had intense therepy that taught me to swallow a new way. Finally, almost a year later, I was and am able to eat or drink anything...oh, happy day!! My voice is back, my vocol cords were bowed during surgery, but therepy and exercise brought my voice back, loud and clear.

     The first topic on our board, HNC superthread, has almost all the answers you could have questions about, including a list of abbriviations..take care, stay strong you'll kick this beast to the curb!

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Hi Vicki,

I joined last month so quite new too. Everyone here is very supportive and very knowledgeable about the practical and daily encounters one experiences throughout the cancer diagnosis, treatment and post treatment stages. 

Given you are 7 weeks post treatment is a great place to be, far better than me for example you has yet to start the actual treatments and the ensuing side effect issues.

Good luck and welcome.

Don

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