Hello All.
I have myself in a tizzy. I walked into my parents room earlier and was immediately assaulted by "that" smell! I haven't smelled it for so long, not since mom completed her tx's. I feel like I am coming undone, the fear that is boilng up inside is overwhelming. I asked her when she sees her RO next and she said May. I am so shook up, I can't think straight. She has been going for her check ups and thus far has faired well. This smell...do you know what I am talking about? What should I do? I don't want to freak her out but I think the RO needs to be contacted. I can't believe how out of control I feel inside. I haven't been this frightened in a while--well, not since November when Jackie had her tonsils removed and I knew that they would be biopsied. or when Jerry, yes, our Jerry, used the veloscope on me, I don't think I have ever been so quiet!
Any advice would be so welcome. Thanks.
Donna

Maybe its nothing, but maybe you have sensed something. Why don't you call her R.O. and suggest that your Mom's appointment needs to be rescheduled. Then you can just present this to your Mom as a "date change". Can't hurt and would definitely put your mind at rest.

I don't know the smell you are referring to, but maybe some other caregivers do. I do however believe we need to trust our "gut instincts".

Good luck Donna. Let us know.

Donna if i close my eyes that smell is there!!!i will never forget it and like you if it reached my nose again i would know straight away.May is a while away sweetie ,too long to wind yourself up.

love liz

I will call or email him today. I didn't sleep much last night worrying about it. As we all know, worrying is a waste of time if we don't do something about it.
I'm wondering too if it could be a possibility of the new MLD tx's she is receiving? This therapist has been working on her aggressively and moving all that around-maybe that caused it?
Going to check on mom before I go into work.
Liz,
I hope today goes well and someone reports some info on Paul.
Love,
Donna

Oh! and thanks for being here!!

Can you tell me more about the odor you are describing and what is causing it?

To be absolutely ruthless the smell is dead rotting flesh.The tissue where the hole appears dies and becomes liquid,this creates a a brown fetid discharge.Its very distressing and very hard to treat.

I smelled the same thing last night while at my mothers house. It was the same smell that existed prior to surgery. They said that they thought that there was another tumor at the base of her tongue and the smell confirmed it for me.

There are people that say they can smell cancer and one was a preacher we had one time. AS nasty as he looked, it might have been his body after all it was under his nose. What's bad to me is I can smell it too once in awhile but it's me I sense.

In the United Kingdom they have trained dogs to sniff out cancer .Its an amazing thing to watch,but the odour i was talking about is associated with tumours that have actually burst through the skin creating fistulas that leak this very unpleasant smelling discharge.

I have seen those dogs on TV realiy shows. It's aaazing what animals can do . I forgot about them Liz and thanks for reminding me.

My partner gets what we thought was an overload of saliva which as the cancer progresses is getting worse. It has a very strong smell as well. Is this the same thing all of you are talking about? It's like nothing I have ever smelt but I would know the smell anywhere. He hasn't started treatment yet and I've read that saliva dries up with radiation. Should I be expecting this to go away or will it stay?

Wendy,

Get this checked out as soon as you can. My only experience with those types of odor issues is from this site hearing from caregivers in very late stages of this cancer usually when the cancer is about to or has already broken through the facial skin. Infection can also cause bad odor as well as an imbalance of the bacteria in the mouth but your description of the odor bothers me.

What Cookey is talking about is also known as tissue necrosis (which is the medical name for tissue death). For what it's worth this is an ENT or head and neck surgeon direct visualization exam and/or scope.

As David stated, a nasty infection could be the cause as well.

I have to admit that my RO did VERY thorough oral cavity exams but she also specialized in H&N cancer at a major CCC.

This odor would be quite prominent, far over the top, than bad breath or halitosis. In a totally different league than so-called cancer sniffing dogs. They wouldn't have to have scent capabilities 100X more sensitive then human smell for this odor. It would probably overwhelm their sensitive sense of smell.

And your mind certainly can imprint scents. I still smell the burnt flesh from a nasal cauterization (for a nosebleed) I had, as a child, whenever I get a cold.

WOW, as I was reading this it just reminded me of how my husband talked about how bad my breath smelled before I was diagnosed. He even told the ENT that my breath stunk no matter how many times I brushed my teeth. I never could smell it. I guess maybe I should have him smell my breath more often to make sure there is no reoccurence. I am sure he would like that.

lol....Angelina, I'm sure he would be happy to smell your breath for you. My husband checks my tongue all the time with a flashlight. I try to brush before we investigate but I usually don't and he still does it.

A few months ago i was clearing out my spare romm,and i opened a drawer in the wardobe unit.The smell hit my nose,and i was immediately transported back to 18 months previously.It was a tee shirt that rob had worn when he was sick.When i closed up the flat in hampshire i had to fumigate the whole place as no amount of cleaning products would get rid of the smell.Its truly unforgetable.

The story about the dogs was a side bar gary and not intended to refer to the smell of necrotic tumour or tissue.I believe the dogs are able to scent cancer even before a diagnosis has been made.

liz

Thanks Davidcpa, I'll mention it to the doctors again on the next visit. The smell is not bad, just very strong so I don't think it's an infection. And it's clear as well, just like saliva. We've mentioned it to the doctor's a few times now but none of them have made comment on it. I might have to get a bit tougher with them I think.

You must be persistant with doctors if they don't answer you. I've had to be a real biotch at times which is not my nature but sometimes you have to do what you have to do.

I couldn't agree more about being persistent. I think the doctors think we don't know what we're talking about sometimes. My mom goes to a lot of appointments with me because Ray is at work. She can get down right embarrassing!! She doesn't take any crap and demands answers...lol My poor doctors.

I just re-read your signature. Chemo can cause bad breath and also leave a very strong chemical like body odor (especially if you are getting Cisplatin). Chemo also does a number on the stmach lining as well so anti acids may help, since a lot of bad breath issues are stomach related. I don't believe that you want the type with magnesium though, stick with Famatodine (Pepcid AC). Get a prescription so you don't have to buy it over the counter.

Hi Gary, Chemo hasn't started yet. Sorry but being an aussie makes me put the dates different. It starts on the 15th of this month. We just like to be different in this country. I wouldn't say his breath is bad smelling, just a strong smell of a night. I can kiss him no problems and smell nothing. But of a night he seems to get an excess of saliva and it has an odour of .... saliva I suppose. Not too sure. But I'll keep your advise in my list of things I need to know so that if this happens during chemo I'll be prepared. Thanks.

Maybe part of the odor is from the teeth removal. I had mine removed and even I could smell the odor at times . I would get up and rinse my mouth and brush what i could inside my mouth.

There are lots of flora changes in the mouth of someone that is going through treatment, and it is also hard for them to keep their mouths really clean because of the discomfort in doing so. That some of them have bad breath isn't really a surprise. But having stated that, it is a good idea that the docs, or the dentist involved take a good look around to be sure there are no other contributing things like an abscess or something else. In my own case the most painful thing was to keep my tongue clean (I brush it now) because of all the mucocitis sores on it, and it is a great place for foul smelling bacteria to collect in between all those papilla.

I smelt something today...not sure if cancer or not, it did go away...the dog however DOES know something isn't right....I think...

Brian, I'll push him to mouthwash more...even if he hates me for it...

My father has oral cancer for 5 years now...gone untreated because he has refused treatment....now the tumor has almost covered the bottom of his face...anyway the odor described of rotting flesh is the smell that was coming from my dad...my brother who has just gone to visit dad said there is a "different odor" along with it and he described it as "barley" smelling or chlorine....any thoughts from anyone?? thanks!