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09-30-2010, 10:31 AM
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#1
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Herceptine and runny nose..did it stop just before you recurred..?
Hi guys,
I hope that you are all well considering. I am still in process with my treatments (will know more in three weeks after scan and special markers I have kind of instigated myself (long story) more if it works..) but I had noticed something about my nose stopping to be runny a couple of months before I could palpate the recurrence
Herceptine always used to give a runny nose for 3.5 years always except....until just before I recurred.
I interpret that as the usurpation of the immune system by tumors, perhaps a Th1/Th2 imbalance
have any of you have noticed that?
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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09-30-2010, 12:03 PM
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#2
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Re: Herceptine and runny nose..did it stop just before you recurred..?
Thats interesting, I have the runny nose, such a nuisance, am on Herceptin.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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09-30-2010, 12:21 PM
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#3
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Herceptine and runny nose..did it stop just before you recurred..?
Welcome back FOB. Please let us know what treatment options you went for in the end. I know you had many suggestions from the board and it would be really useful for others facing similar issues.
The herceptin symptoms you mention are very interesting. I checked back in my diary and found that I had snuffles, runny nose and joint pain up till about 2 months before my recurrence.I am now on just herceptin and again have a runny nose etc plus I seem to get more colds and also mouth ulcers and cold sores than before which take longer to clear up. I try to view this positively as my immune system fighting back! After all some of the documented cases of spontaneous remission follow a bacterial/viral infection where the immune system 'wakes' up and recognises the bc cells.
Ellie
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09-30-2010, 04:09 PM
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#4
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Herceptine and runny nose..did it stop just before you recurred..?
Truth is I cannot wait to have a runny nose back..
Elly yep funny that you have noticed that too.. well if that is a sign it might be a early detection sign for all of us who reacts with herceptin with runny nose..
Has anyone who is not on chemo and has mets has runny nose would be the next question.
The runny nose is to me a sign of your immnune system reacting (well) to antibodies.. Thelpers (Th2) cell are found in greater number in cancer patients and these are used to dampen the immune response or tell it to stop so one doesn't over react to say allergen..but cancer produces (via cytokines) some more so it does not get attacked..
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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09-30-2010, 05:29 PM
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#5
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Senior Member
Join Date: Aug 2010
Posts: 72
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Re: Herceptine and runny nose..did it stop just before you recurred..?
Thank you for this interesting thread. I know this is not quite what you were asking, but if I may? Had anyone noticed bloody discharge when on Herceptin and then have it subside and then start again several months later? I have been on Herceptin since April and had the bloody discharge and then it stopped for several months and just started up again. I have always had the drippy nose but the discharge thing existing and the stopping and then starting up again has me a bit stumped. Does anyone have any experience with this?
Be well and God Bless.
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09-30-2010, 05:35 PM
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#6
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: Herceptine and runny nose..did it stop just before you recurred..?
I only had 4 weekly Herceptin after 18 weeks of TCH, so I don't know if it was caused by the chemo combo (TCH) or Herceptin. But I did have extremely dry nose and had blood (dried?) in my nose during chemo. My oncologist suggested for me to rub vaseline inside of my nostrils.
There's thread discussing the nose bleed issue:
http://her2support.org/vbulletin/sho...ght=blood+nose
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 09-30-2010 at 05:52 PM..
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10-01-2010, 09:59 AM
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#7
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Senior Member
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
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Re: Herceptine and runny nose..did it stop just before you recurred..?
I did a year of herceptin in 2005, when diagnosed stage 2. I had a runny nose the whole time I took herceptin.
I have mets to my liver, that was diagnosed in July, 2010. I have been on Herceptin weekly, and have not had a runny nose, at all. I thought it was strange , and I kept thinking that it would start again, as it did in 2005.
I have my first scan on Mon, to see if the liver tumor has shrank. So, I guess I will also be hoping for my nose to start running?
Laurie
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10-01-2010, 12:42 PM
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#8
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Herceptine and runny nose..did it stop just before you recurred..?
Glad to hear from you. Keep us posted on how things are going. I was diagnosed with mets to my lungs in August. My nose continued to drip. Maybe my allergies caused the running nose.
I am now doing the TMD 1 trial taking Xeloda and Tykerb.
Amelia
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10-02-2010, 04:54 PM
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#9
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Herceptine and runny nose..did it stop just before you recurred..?
Schoolteacher you seem the exception so far. But as you mention you have allergies, I know that it is not your case but I remember reading somewhere that people with strong/many allergic reactions have less cancer, which is logical.
Jackie personally I am always in favour of natural option first product for example, but since it is going in your nose it need to be a bit 'waterproof' like vaselin, maybe bee wax based product..
Anna no I never noticed a bloody discharged when on herceptin, just the dripping nose.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
Last edited by fullofbeans; 10-02-2010 at 04:59 PM..
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10-02-2010, 07:44 PM
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#10
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: Herceptine and runny nose..did it stop just before you recurred..?
About allergy - hate to say this - but all three members of my family that has been treated for cancer so far are allergy sufferers. [None of the other 5 members has the allergy problem.]
My Mother used to use nasal spray for her running/stuffed nose and at the age of 87, she's a 12 year survivor of Non-Hodgekins Lymphoma. I suffered allergy all my life especially when I was having symptoms for brain tumor/breast cancer. The other one is my 2nd Brother who always sneezes in the morning when he gets up. He's the healthiest person in the world and ended up having surgery and optional chemo for colon cancer two years ago.
I found a link about 'HNPCC' that seems to explain the genetic connection of the cancers involved in my family.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 10-02-2010 at 07:53 PM..
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10-03-2010, 01:15 AM
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#11
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Herceptine and runny nose..did it stop just before you recurred..?
Jackie sorry to hear about your family 's cancers.. and this heriditary component obviously seem to be overriding potentially strong immune response..
I just checked again but yep meta analysis have definitely associated allergies with significant cancer decrease (just google allergy and cancer), sometime with higher decrease chances of up to 60% in certain cancers.
Biology is never straight forward..unfortunately
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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10-03-2010, 06:30 AM
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#12
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Herceptine and runny nose..did it stop just before you recurred..?
Interesting the whole issue about allergies! When I was younger (20's) I had a number of allergies that came out of nowhere as I hadn't had them as a child. I guess they wore off and I kind off forgot about them. Now any little thing seems to set me off, like perfume, hairspray to name but a few. This has only been post chemo and on vit h.
Ellie
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10-04-2010, 12:46 PM
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#13
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Herceptine and runny nose..did it stop just before you recurred..?
FOB,
It is strange, but right before I found my BC my allergies were not that bad that fall, and I thought that was really strange.
Amelia
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10-04-2010, 01:37 PM
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#14
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Herceptine and runny nose..did it stop just before you recurred..?
Amelia, although I am not an immunologist and even if I was the answer would not be straight forwards, but nonetheless personally I am not surprised and I am pretty sure that many people with your allergy type based system may find the same. Also, sore throat may be a sign of dampen immune system, I am pretty sure many of us would have experience that symptom too..
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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10-04-2010, 02:07 PM
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#15
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Herceptine and runny nose..did it stop just before you recurred..?
Dear FOB -
Hope your scans will bear good news.
Remind us what you are doing for treatment - Tykerb?
Interesting you should mention the sore throat symptom - I recall that I had a scratchy throat for about a month (basically from Thanksgiving to New Year's) before mets diagnosis. I thought it was just a winter bug that was low grade.
__________________
"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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10-04-2010, 11:54 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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Re: Herceptine and runny nose..did it stop just before you recurred..?
no my nose runs on!
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10-05-2010, 12:03 AM
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#17
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Re: Herceptine and runny nose..did it stop just before you recurred..?
I had the slightly drippy nose while on herceptin.
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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