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Cookey #92731 03-28-2009 03:23 AM
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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.


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
Cookey #98649 07-03-2009 02:30 AM
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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?


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
WendyG #98659 07-03-2009 05:36 AM
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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.


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.
davidcpa #98680 07-03-2009 11:56 AM
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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.

Last edited by Gary; 07-03-2009 11:58 AM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #98699 07-03-2009 04:55 PM
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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. smile


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #98710 07-03-2009 06:05 PM
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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.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #98725 07-03-2009 11:18 PM
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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


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.
Cookey #98729 07-04-2009 03:23 AM
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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.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
WendyG #98742 07-04-2009 07:47 AM
Joined: Jan 2008
Posts: 706
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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.


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
suemarie #98747 07-04-2009 08:34 AM
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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.

Last edited by suzanne98; 07-04-2009 08:35 AM.

Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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