Mouth Pain

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.

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

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

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.

corleone said:

Here's my story

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.

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.

George_Baltimore said:

Abbreviations

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.

 

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.

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