| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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08-03-2010, 06:39 PM
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#1
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Member
Join Date: Aug 2010
Location: HK
Posts: 12
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Herceptin only/ no chemo?
I am newly diagnosed. 45 yrs old
IDC 0.4 and 0.6mm, Stage 1, grade 1
ER+ , PR-, Node Negative, HER2 Positive
Since my Tumor size & Grade Says No Chemo...Thats what I started out thinking. Onco recommended me to have Chemo with tamoxifen since I am HER2 Positive and ER+. Can I just have tamoxifen along with Herceptin without going thru the Chemo?
Anybody has the same situation?
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08-03-2010, 06:53 PM
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#2
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Herceptin only/ no chemo?
kklee,
Definitely take standard Her2 BC treatment - chemo + Herceptin + Tamoxifen.
This is a very vicious BC. Grade 1 only means it's not growing as fast as grade 3, doesn't mean it's not Her2. When you have Her2, you want to use everything possible to get rid of it. There have been many subtypes found so far. Your doctor wouldn't take chance, you certainly don't want to shortchange yourself.
__________________
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
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08-03-2010, 07:41 PM
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#3
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Member
Join Date: Aug 2010
Location: HK
Posts: 12
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Re: Herceptin only/ no chemo?
Hi Jackie, Thks for your reply.
Will that make a diff. if I have mastectomy?
Alternate Onco suggests me to take tamoxifen + Herceptin only to minimize the toxicities. However, Herceptin normally goes with Chemo and rarely used alone.
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08-03-2010, 07:49 PM
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#4
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Herceptin only/ no chemo?
Herceptin is 'the' weapon against Her2 positive breast cancer. You definitely want to have Herceptin.
__________________
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
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08-03-2010, 08:00 PM
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#5
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Member
Join Date: Aug 2010
Location: HK
Posts: 12
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Re: Herceptin only/ no chemo?
My ONOC says can take either Chemo + Tamoxifen or Herceptin + tamoxifen? Which way is more appropriate?
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08-03-2010, 08:14 PM
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#6
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Herceptin only/ no chemo?
What about asking the oncologist about adding a short course of Navelbine? It is a good chemo that is tolerable for most people. Take good care of yourself.
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08-03-2010, 08:45 PM
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#7
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Member
Join Date: Aug 2010
Location: HK
Posts: 12
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Re: Herceptin only/ no chemo?
He is suggesting either TC or AC for chemo, 4 doses. I thought TC would be v. strong as he suggests adding WBC booster at the same time.
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08-04-2010, 06:57 AM
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#8
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Herceptin only/ no chemo?
Back in 2002 when I was diagnosed, chemo was not recommended for my tumor size and neg nodes...I fell into the chemo not needed group by the American Cancer Society....herceptin was not available, only for Stage IV pts, and I was Stage 1....so I had a mastectomy, and I was ER- so no anto hormonal/
Needless to say, it returned a year and a half later, and I have been in treatment ever since, non stop. Do yourself a favor and get more than 1 opinion, then do all you can to prevent this from returning...its your life!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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08-04-2010, 09:34 PM
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#9
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Member
Join Date: Aug 2010
Location: HK
Posts: 12
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Re: Herceptin only/ no chemo?
Talked to my Onco and he suggests 9 weekly Navelbine + Herceptin and 5 years tamoxifen. How's that sound?
What'll be the side effect of Navelbine?
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08-05-2010, 09:14 AM
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#10
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Herceptin only/ no chemo?
I would definately get another opinion...you aren't getting enough Herceptin from just 9 weeks, the Tamoxifen 5 years is a standard, although they are switching it to other AI's instead of 5 full years of Tamoxifen...as far as the navelbine, I found it very easy to take, no problems, but also that is not standard therapy for first line treatment.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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08-05-2010, 11:56 AM
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#11
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Herceptin only/ no chemo?
About navelbine - we have seen more members here reporting getting for early stage BC. Navelbine works well with Herceptin. It worked well for me for stage IV.
I agree with Sheila that you could benefit from more than just 9 weeks of Herceptin.
Are you in Europe? The doctors there may be looking at the Finher trials that specified only 9 weeks of Herceptin.
You have to consider "micrometasteses" - the cancer cells that can escape and lodge in bone marrow or elsewhere, and make a sneak attack later on. They are undetectable at early stage.
__________________
"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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08-05-2010, 06:41 PM
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#12
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Member
Join Date: Aug 2010
Location: HK
Posts: 12
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Re: Herceptin only/ no chemo?
Yes, StephN, while I'm in Far East, my Onco says he's referring to a study in N. Europe that 300's patients are taking Herceptin continuously for 9 weeks and the reduction of RR rate is 40%. While using std Herceptin full year every 3 weeks would reduce by 50%. He mentions that the result is comparable for Navelbine+Herception 9 weeks and Herceptine alone for full year course.
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08-05-2010, 06:58 PM
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#13
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Member
Join Date: Aug 2010
Location: HK
Posts: 12
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Re: Herceptin only/ no chemo?
Yes, Sheila, I'm going to another onco tmw for his opinion.
What happening in HongKong is Public Health Care does not offer Herceptin for early BC <1mm though w/HER2. The standard package is TC or AC therapy every 3 weeks for 4 doses. Herceptin or navelbine is offered by private practice doc, paid out of my own pocket and thus, my onco is trying to minimize the spending with best available effects. The full year course on Herceptin only is USD43K here and he says not many patients will afford.
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