Posted By: Weeze500 Daughter with tongue cancer - 04-29-2008 03:23 PM
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?
Posted By: Tizcolleen Re: Daughter with tongue cancer - 04-29-2008 05:57 PM
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.
Posted By: Weeze500 Re: Daughter with tongue cancer - 04-29-2008 06:04 PM
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).
Posted By: davidcpa Re: Daughter with tongue cancer - 04-30-2008 09:37 AM
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.
Posted By: Cookey Re: Daughter with tongue cancer - 04-30-2008 05:23 PM
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
Posted By: Weeze500 Re: Daughter with tongue cancer - 05-01-2008 11:05 AM
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.
Posted By: johnny47 Re: Daughter with tongue cancer - 05-15-2008 12:43 PM
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
Posted By: Weeze500 Re: Daughter with tongue cancer - 05-16-2008 02:27 PM
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.
Posted By: EzJim Re: Daughter with tongue cancer - 05-18-2008 07:03 PM
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.
Posted By: Bailey4 Re: Daughter with tongue cancer - 05-20-2008 03:52 AM
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.
Posted By: Martine81 Re: Daughter with tongue cancer - 05-21-2008 12:09 AM
I sympathize with what your going through. I highly recommend rethinking about cutting the cancer out of the mouth. I had a hemiglossectomy and know how hard the decision is. I truly believe the surgeries I had saved my life. Best of luck to you.
Posted By: chilled_fire Re: Daughter with tongue cancer - 05-21-2008 12:04 PM
try Betadine gargle , it helped my dad in keeping his mouth clean and odour free.
But please consult ur doc regarding the same , cause hes the right person to solve this.
Posted By: Weeze500 Re: Daughter with tongue cancer - 05-21-2008 05:35 PM
I will definitely pick up some Oasis or Betadine to see if it helps my daughter. As for surgery, I'm not sure why she has decided against the surgery. I think it's fear and exhaustion. She is tired. She will be on a feeding tube the rest of her life (and has been since April, 2007). She has lost so much weight and has little energy. She is loosing her voice. It is now so difficult to understand her. She is having a hard time accepting that she must write things down. I don't know that surgery is even an option at this point. It is such a sad process to see the cancer eat away at her.

I do appreciate all of your comments.
Posted By: EzJim Re: Daughter with tongue cancer - 05-21-2008 11:12 PM
I forgot I lost a part of my tongue and had a left neck radical dissection. Then I was pronounced cancer free, but man did they blow that one. Just like your daughter, mine came back in less than 2 months and was on both sides of my tongue. After that is when the teeth went and I started rads and chemo for the tongue implants. Wish I could talk to your daughter and convince her that she has a chance to beat this nasty stuff. I supposedly have won this war.
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