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#73840 04-29-2008 08:23 AM
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My daughter (age 42) has tongue cancer. She was treated last year (March '07) with radiation and Erbitux. She was pronouced cancer free November '07 but in February '08 the cancer was back and worse than ever (stage 3). She has chosen not to do surgery so there is little that can be done for her at this time. She has had a feeding tube since April '07 and is not able to take anything by mouth. My question is this: the cancer is producing a terrible odor from her mouth that is almost unbearable. Is there anything that we can do to help ease this odor?

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So, so sorry to hear about your daughter and that she has to deal with this again.

My brother was only recently diagnosed and is just beginning treatment, but he did have some pretty foul smelling breath at the outset and then a tooth just dropped right out of his jaw! The tooth obviously was rotted and because of his tumor, neither he nor a dentist was able to get up there to do anything about it.

You don't mention in your post but does your daughter still have her teeth? Could this be contributing? Just a thought.

My prayers are with you.


CG to Brother - 56 yrs - DX 3/17/2008 - SCC mouth, nodes and lungs.
T4N2M1 Taxotrene (1X), Cisplatin (4x) 5FU (4x)
Tx began 4/10/08 - told 5/28/08 time for hospice - he passed on June 5, 2008.
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My daughter still has all of her teeth. The doctor said the odor is coming from the dying tissue (I think that is how he put it).

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I am sorry about your daughter's condition. There have been others that have had similar experiences about the odor but I have never heard anyone discuss what they were able to do about it. Hopefully you will hear from one of them.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Unfortunateley this is a difficult problem,and is caused by necrotic tissue in the mouth.Robins was so bad it permeated the whole flat,and when he was admitted to the hospice it was a major issue.Oral hygeine is essential even though it is painful,and we used and small electric fan with an infusion of laveneder oil under the bed or beside his chair.The hospice used a machine that purified and deodourised the room.
Not much other help i can offer i am afraid.

hope someone else might have some better advice.

liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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Thank you for your replies. Using your ideas, Liz, will help at home. However, my daughter is still able to be up and out in public. My son went with her to a concert last week and he could tell the people around them were having a difficult time with the smell. I'm not sure how to even approach the subject with her. She has so much anger inside right now.

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I use a mouthwash made by oasis. It is alcohol and peroxide free.

It is soothing, has a slight mint taste and will hydrate the mouth as well. And yes, it does help with the breath issues. Rinse and gargle 2-3 times per day.

Helps me anyway


Stage 4A SSC Left Tonsil, back of tongue and Lymph nodes on left side. Tonsil removed, Chemo and Radiation treatments completed on June 26, 2008.
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My daughter was hospitalized last week for pneumonia. During her stay there they found out she also was anemic and gave her two units of blood. She will be returning today for another unit. While there, they sucked a lot of awfully foul smelling gunk out of her lungs. That has taken care of the horrible odor, at least for now. I hope it lasts a while. Kris is still up and about and takes care of herself but she is not feeding herself much and is getting so thin. I think she is just giving up.

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Weeze, I had Erbitux and rads too, followed by radiation seed implants in my tongue. She is just about the same as I was except they removed all of my teeth. I have been pronounced Cancer Free after the implants. Still hurt a lot, but I'm alive. Tell your daughter to check out the implants.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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My daughter had the same foul smell from the cancer/sores. She used oasis and another mouthwash free of irritants, it helped some. Also, simply rinsing mouth frequently w/ water and or water and baking soda helped some.


Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
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