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03-04-2008, 11:35 AM
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#1
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Prior To Diagnosis~Notice Any Changes In Body Scents??
This has always been something I tried to explore for an answer, mostly with doctors and Lani. On a previous post Schoolteacher was wondering too. Here is our question:
"Did you notice ANY difference is body odor BEFORE getting diagnosed??"
Example: Ed worked out every night and never had an odor on his clothing or body before the shower. Right before getting diagnosed with cancer his sweat was very 'ammonia-like'.
Schoolteacher had a similar situation and too wonders.
Anyone out there with a story you can share so we can find out some answers to a question we never knew to ask before??>>Believe51
PS: Maybe this could help someone in the future.
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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03-04-2008, 11:56 AM
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#2
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Believe51,
I did not, but I have read that dogs have been known to "smell" cancer - to pick up a scent from a tumor.
Hopeful
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03-04-2008, 01:40 PM
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#3
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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I don't remember having any new body odors that I noticed.
My survivor friend says that her Jack Russel terrier sniffed at her breast for a while before the diagnosis.
I do remember that the summer before diagnosis I started taking a nap during the day on some, but not all, weekends. I never napped in my life before that, and I haven't napped since. If I start napping again, I'm calling my oncologist.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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03-04-2008, 01:42 PM
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#4
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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This is very interesting, because of what MJo mentioned about dogs being able to sniff and DX cancer in its earliest stages...
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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03-04-2008, 02:22 PM
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#5
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Member
Join Date: Dec 2007
Location: Columbia,SC
Posts: 16
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Don't know if I would have made a connection, but my urine was very amonia-like several months prior to diagnosis. Interesting...
__________________
Madge
Diagnosed Jan 07
Stage IIa
2 cm IDC Her2+++, ER+
Venous/Lymp Invasion present
Neoadjuvant Chemo Herceptin/Taxol X4 complete response-no evidence of tumor
6/07 tumor "bed" removed
SN biopsy neg (performed after Herceptin)
FEC x 2
Rad X 28
Herceptin every 3 weeks until April 08
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03-04-2008, 02:29 PM
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#6
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Madge,
Now that you mentioned it, my urine also had an ammonia-like smell two or three months prior to me finding my BC. I wondered why I had the smell, and I honestly though I might have a urinary infection.
Amelia
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03-05-2008, 12:37 PM
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#7
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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It is 'lil ole me again...
Doing the bump again. Hoping to get some input from anyone who may have missed this>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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03-05-2008, 12:47 PM
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#8
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Senior Member
Join Date: Aug 2006
Location: Franklin, MA
Posts: 131
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It's hard to say because I was pregnant at the time...any "symptoms" I had, I was attributing to the pregnancy. Once I started chemo, my cats picked up on a different scent...they stick to me like glue after treatment.
__________________
Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
Last edited by Colleen007; 03-05-2008 at 12:47 PM..
Reason: spelling
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03-05-2008, 01:08 PM
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#9
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Don't recall any specific body odors, but it was back in 2000 and I may have forgotten.
My cats noticed "something" about me as well. We had two at the time of my dx, and they are mostly indoors, but one started being more vocal toward me at times and sitting on my lap while I was on the computer.
Don't recall that my daughter's dogs (they live nearby) acted differently as they were always sniffing and jumping on people anyway. Just the kind of breed.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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03-05-2008, 02:41 PM
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#10
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Senior Member
Join Date: Sep 2005
Posts: 232
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I don't recall an odor, however someone mentioned in an above post that dogs can be sent trained to detect cancer (diabetes, too). I am currently working with a dog trainer who trains dogs to detect when a diabetics sugar level is off. It is truly amazing what these dogs can do.
Karen
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03-06-2008, 10:37 AM
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#11
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Senior Member
Join Date: Apr 2006
Posts: 63
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Believe51,
Releasing ammonia in your sweat is caused by burning protein during your exercise instead of carbohydrates. If you are low on carbohydrates, the body dips into the protein reserves, which means your muscles or whatever protein you ate recently, ie amino acids. Ammonia is the by-product of burning off the protein.
I'd be skeptical that it relates to cancer. The ammonia smell is a common topic of discussion among athletes.
Amy
__________________
Amy age 37 at dx
Feb 2008 Multifocal DCIS
Apr 2008 Bilateral Mastectomies
Sister to Laura age 37 at dx
April 2006
9 cm ER-/PR- Her2 +++/bone mets
neoadjuvant TCH plus Zometa
November 2006
bilateral mastectomy - Change to ER+/PR- Her2 +++
January 2007
innumerable tiny brain mets - WBR
March 2007
good response to WBR - some gone, all smaller
currently on Lapatinib and Xeloda
Feb 2008
Brain MRI: brain mets went from innumerable (jan '07) to 5 (june '07) to 3 (oct '07) to 1 that is getting less conspicuous(feb '08) PET/CT: Slight uptake in some sclerotic bone mets
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03-06-2008, 11:03 AM
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#12
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Its me
Hey Amy, the topic is currently being investigated by doctors and Dana Farber, I just thought I could get some feedback here. Ed always sweat during these workouts BUT this came about weeks before getting diagnosed with stage IV breast cancer. Hormones may be a culprit but again Dana Farber and our other doctors are studying this mostly with men. Most men with breast cancer (I speak with many) experience this and although we thought that bc was bc there are many differences. We are now treating these cancers different than women now (recently). Just trying to gather any information on my part. There is a piece missing to understanding male bc and I hope I live long enough to see the puzzle completed AND as close to a cure as possible!!
Thanks for the reply and all the support over this last year, we appreciate it Amy.
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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03-06-2008, 12:14 PM
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#13
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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"...I hope I live long enough to see the puzzle completed AND as close to a cure as possible!!..."
From your fingertips to God's ear!!! I pray for this every day for all of us...
At times in my life, I have noticed the ammonia smell in my urine, but I can't honestly say if it was before each diagnosis. I CAN tell you that the meds I take now smell worse than eating asparagus..lol...tmi
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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