 |
|
10-15-2013, 08:19 PM
|
#21
|
|
Senior Member
Join Date: Jun 2012
Posts: 129
|
Re: ER/PR negative survivors
Yep, me too...hormone neg, HER2 +++. Need to update my status but just had my second "every 6 months" mammo which was clear! My next appt is with onco in january. Just moving forward!
__________________
Age 54, married farm wife/school nurse/mom of 5 adult children...March 2012- found 2.5cm hard, non-painful mass on bse. It was not there, and then it was. Yikes.
Biopsy- DCIS, IDC, er-/pr-/her2+++, grade3. 1 node suspicious on us. Biopsy +.
Plan was for Neoadjuvant TCH x6, Herceptin q3w x a year.
May1- first chemo.
May 5- I could no longer feel the mass. Really. Neither could my oncologist.
July 2- 4th TCH- Oncologist cancels last 2 tx due to "complete response"
August6- lumpectomy with axillary node dissection. No disease present in breast. 1 out of 14 nodes + (4mm)
MUGA #2- 72%
Finished 30 rads Oct '12. Mild lymphedema noticed when I had 2 rads left.
Continue Herceptin q3w until next May
April '13- first mammo since surgery- calcium deposits that are " not concerning." Well, they are concerning to ME! Turned loose from surgeon for 6 months! One more Vit H, will make plans then for port removal.
Oct '13- no change in calcium deposits. "See ya in 6 months!" Keeping port for now.
March '14- oncologist says return in 6 mo.
April '14- mammo unchanged. Surgeon will see me in 6 months but no mammo for a year unless something changes. Its getting easier, but oh, boydo i hate that scanxiety! Keeping port until 2 year anniversary of last Herceptin.
Sept'14- bloodwork good, return to onco in 8 months.
Oct'14- surgeon will see me in April '15. Moving on.
May '15- mammo unchanged, keeping same schedule. Tumor markers soon and if all is well port comes out.
July '15-tumor markers normal. See onco in a year. Appt. for port end of month. First grandchild born July 1st- for today, life is good.
|
|
|
|
10-16-2013, 09:12 AM
|
#22
|
|
Senior Member
Join Date: Jul 2006
Posts: 869
|
Re: ER/PR negative survivors
er/pr negative diagnosed 2003...currently on kadcyla Ceesun
|
|
|
|
|
10-16-2013, 12:53 PM
|
#23
|
|
Member
Join Date: Oct 2013
Posts: 5
|
Re: ER/PR negative survivors
Hello all - I just hung up with Mayo Rochester. Thanks to this site and some of your posts, I am now looking into the Her2 clinical trial (vaccine). I didn't even know one existed.
I don't like that it is phase 1 but I also don't like not really having any other options.
Mayo is sending me some articles & literature and I will talk to the trial nurse later this week.
I am curious for those of you that knew about the study and decided to not do it as much as I am curious about those of you that looked into the study and chose to do it (if you feel like sharing that information).
I can't thank you all enough for replying to my post and reminding me that I am not alone and all we can really do is put one foot in front of the other. I am focusing on the word surrender but that has never been my type A way 
Thanks again and God bless each one of you!!!
With love,
Christy |
|
|
|
|
10-16-2013, 02:23 PM
|
#24
|
|
Senior Member
Join Date: Aug 2011
Posts: 271
|
Re: ER/PR negative survivors
Christy,
As you can see from my signature...I just went through the Mayo trial. I private messaged you my phone number. Call me I will tell you all about my decision and my experience. I did quite a bit of research.
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
|
|
|
|
|
10-16-2013, 04:15 PM
|
#25
|
|
Member
Join Date: Nov 2012
Posts: 16
|
Re: ER/PR negative survivors
Hello Christy
I was diagnosed with ER- PR+ HER2+ breast cancer, Stage 2, with a 3.4cm grade 3 IDC tumour and 2.8cm of DCIS in January 2013. No lymph or vascular invasion.
After aggressive treatment (one mastectomy, eight rounds of chemo, 15 rounds of radiation and 18 rounds of Herceptin), I'm doing fine.
No signs of spread (October 2013). It's not inevitable!
Good luck
Catkins
__________________
January 2012 - Grade 3 DCIS (2.8cm) and IDC (3.4cm) HER2+ diagnosed.
February 2012 - Mastectomy. No vascular or lymph node spread.
March-May - 2012 FEC x 4
June-July 2012 - Taxotere x 3
August 2012 - Taxotere x 1+ Herceptin
September 2012+ - Taxotere x 17
October 2012 - radiation x 12 rounds
January 2013 - Started Arimidex.
January 2013 - Finished Arimidex due to a reaction.
|
|
|
|
|
10-16-2013, 08:15 PM
|
#26
|
|
Senior Member
Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
|
Re: ER/PR negative survivors
Hello Christy!
I'm in the ER/PR - Club, too!! So glad you posted this thread...I will finish my Herceptin in April. I try to keep myself informed of what I can...always looking "online"...obviously coming here, ...LOVE THIS PLACE...so much knowledge, wisdom & support...I will see my oncologist very soon and am going to ask the same...clinicals...I want to do ALL I can do...however, I'm learning to LIVE FOR TODAY...Thanking God for Each Day!!
Thanks for the post Christy!!
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
|
|
|
|
|
10-20-2013, 09:33 PM
|
#27
|
|
Senior Member
Join Date: Jun 2009
Posts: 343
|
Re: ER/PR negative survivors
Hi, I'm in the club too. So far, so good
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
|
|
|
|
|
10-20-2013, 09:55 PM
|
#28
|
|
Senior Member
Join Date: Feb 2006
Posts: 1,014
|
Re: ER/PR negative survivors
I am 8 years out..NED..stage IV, ER/PR- . We all have crappy days and it's always good to know you are not alone and there are people who support you...sherryg
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
|
|
|
|
|
10-21-2013, 10:34 AM
|
#29
|
|
Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
|
Re: ER/PR negative survivors
I do believe crappy days come with memories of the past that plague us or visions of the future that scare us.
So focusing on The Present Moment is key to de-crapping your mind. Concentrate instead, as best you can, and the challenge is quite real, on envisioning yourself as you wish to be.
I AM HEALTHY AND WELL. I WILL SURVIVE. I am certain of it. I KNOW it! I am drawing it to me. Disregard all outward appearances. Refuse to believe in the story you sense is presenting itself to you.
Pains are temporary. A part of the process. A part of healing. You are in a process and in the end, you will be victorious.
FEEL exactly how you would imagine you would feel having achieved your dreams! LIVE -- AS IF what you want ALREADY EXISTS. Because it does! You need to call it to you. LIVE AS THE PERSON YOU WANT TO BE.
Live with joy and serenity. KNOWING what you want is on its way to you.
End of pep talk! I can't help myself.
Sending love, as always,
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
|
|
|
|
|
10-21-2013, 07:39 PM
|
#30
|
|
Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
|
Re: ER/PR negative survivors
Hello....I am also, er/pr negative and her2 +++ - diagnosed stage 2B - 8 year 4 month survivor. :-)
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
|
|
|
|
|
10-22-2013, 06:13 AM
|
#31
|
|
Senior Member
Join Date: May 2007
Posts: 236
|
Re: ER/PR negative survivors
My Mom Sheila's signature..
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
Sheila passed away 12-10-2012
|
|
|
|
|
10-22-2013, 10:07 PM
|
#32
|
|
Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
|
Re: ER/PR negative survivors
Good to see a gathering of the ER/PR negative club. That is me plus Her2 +. See signature below. Chemo first, then surgery, then radiation, then a year of Herceptin. Lucky me I am 7.5 years out and feeling good. Thankful for all the drugs they gave me. Thankful for good doctors, friends, family and the support from this site!
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
|
|
|
|
|
10-23-2013, 05:40 PM
|
#33
|
|
Senior Member
Join Date: Feb 2006
Location: Vancouver Canada
Posts: 72
|
Re: ER/PR negative survivors
Add me to the LONG list! ER/PR negative, Her2+++, Grade 3, no nodes ...as below...
9 years out. Life is good.
__________________
Dx Nov.04 - Stage 1, Grade 3, widespread high grade DCIS, Paget's disease of nipple, 8mm tumor invasive DC (ductal carcinoma), ER/PR-, HER2+++
Nov.04 - left mast., clear margins, 6 of 6 nodes clear
Feb.05 - began EC chemo, 4 rounds (every 3 weeks)
Aug.05 - began Herceptin every 3 weeks for 1 year
Aug.06 - ended treatment
NED
|
|
|
|
|
10-28-2013, 07:51 AM
|
#34
|
|
Member
Join Date: Apr 2012
Location: Norway
Posts: 7
|
Re: ER/PR negative survivors
I also belong in this club. It has now been over 2 years since I forund the lump in my breast. It was so fast growing, but no one could say how long it had been there. I had one lymph node under my arm measuring 22mm, it popped up during a period of 14 days.. 7 of 13 nodes was cancerous  I try to live day by day, but it is hard knowing that between 2-3 years is the most likely time to reacure....
__________________
<3 Kirsti
Diagnosed 10.26.11 with IDC Medullary Carcinoma, 2,2 cm, er- pr - her2 pos. 7/13 pos nodes. Stage 2b. Mx 11.8.11. Started FEC 100 x4 12.16.11. Then had 4x taxotere and Herceptin. 25 rads.
|
|
|
|
|
10-28-2013, 03:57 PM
|
#35
|
|
Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
|
Re: ER/PR negative survivors
Dx w/4th stage invasive lobular in '95. No Herceptin back then. Couldn't benefit from that.
Recurred in '98.
Supposed to dead by 2003. Had other plans.
Live and love each day.
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
|
|
|
|
|
11-12-2013, 12:19 PM
|
#36
|
|
Senior Member
Join Date: Jul 2010
Posts: 120
|
Re: ER/PR negative survivors
You are not alone.
1st Diagnosis (July 2010)
ER/ PR -
Her2 +
2nd Diagnosis (October 2013)
ER/ PR -
Still waiting on pathology report to find out status of Her2
Oct. 28th had modified radical (bilateral) mastectomy so now recuperating.
All nodes clear both times. Size of tumor was 8mm.
I meet with oncologist next week to discuss recommended next steps.
__________________
6/14/2010 - Self discovered Lump; Age 39
6/24/2010 - Biopsy results confirm breast cancer
Right breast, invasive ductal adenocarcinoma
HER2neu positive, BRAC I & II negative
7/8/2010 - Lumpectomy right breast, sentinel lymph node biopsy, & port-a-cath installed on left
Stage II, Size 3.2cm, Clear Nodes, Clear Margins
8/19/2010 - Chemo begins - Taxotere, Carboplatin, Herceptin & Tykerb all simulanteously; ALTTO trial arm 4
9/9/2010 - Chemo dose #2
9/30/2010 - Chemo dose#3
10/21/2010 - Chemo dose#4
11/11/2010 - Chemo dose#5
12/02/1010 - Chemo dose #6 - WooHoo, it is complete!
12/14/2010 - Simulation & Planning session for radiation
02/18/2011 - Completed radiation treatment (33 rounds)
08/04/2011 - Completed Herceptin & Tykerb
09/30/2013 - ultrasound guided biopsy (following annual MRI)
10/1/2013 - new cancer in left breast. 6mm discovered via MRI
10/28/2013 - bilateral mastectomy - no reconstruction
|
|
|
|
|
12-09-2013, 12:43 PM
|
#37
|
|
Member
Join Date: Nov 2013
Posts: 13
|
Re: ER/PR negative survivors
Hello!
Not sure why I can't turn of the "bold" type. Sorry! I was dx Oct. 17/13 Stage 1a, ER-,PR-, HER2+++ Grade 3. Nov. 15/13 Lumpectomy with SNB. No Node involvement. All margins clear. Scheduled to start chemo Jan. 6/13. Hoping to receive TDM-1 trial for early stage people. Won't know until Dec. 24th if I get the trial or not. Thinking happy thoughts.
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 10:02 PM.
|
Linear Mode
