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08-09-2007, 09:19 PM
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#1
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Senior Member
Join Date: Nov 2006
Location: Bedford, Virginia
Posts: 134
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First Meeting at BC Support Group - No HER2Neu
Thought I'd share with you my first experience at a BC support group. When I was first diagnosed last June, an old friend gave me a book titled "BOOBS," best of Breast Cancer Survivor Stories. It was a great read! It was about 8-10 women and their BC experiences. They were members of a BC support group outside of Atlanta. At a RLF in June, I saw the happiest group of ladies who were members of a support group for BC. I finally joined them for a meeting, and they were absolutely fabulous. There are about 15 members. When I asked the members of this BC group if any of them were HER2Neu +, most of them didn't know what I was referring to much less did they have the gene.
The moral to this story. I am so grateful to have found this website and you gals. I will continue meeting with new friends in the BC group because they are a great bunch of gals with whom I share a lot, but I am most grateful for finding this group (HER2Support.org) with whom I share everything.
Wishing you all a great weekend!
Louise
__________________
- Diagnosis 06/06 - Stage II-A BC; BC was 2.5 cm, grade 2; ER/PR negative & HER-2/neu positive;
- Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
- AC/Cytoxin combo - 4 treatments (dose dense);
- Taxol/Herceptin combo- 12 weekly treatments;
- Completed chemo - 2/07; completed restruction 02/07; reduction of left breast.
- BRCA 1 and 2 negative - 6/15/07;DX high risk for distant recurrence
- MRI, 08/02/07 - NED
- 1 year Anniversary - 09/07; completed Herceptin 11/07.
- Mammo 02/14/08 - NED; MRI - 08/2008 - NED
- 2 year Anniversary - 09/08
- Mammo 02/09 - NED; MRI - 08/09 - NED
- 3rd year Anniversary - 09/09
- 5th Annivery - 09/2011 - NED
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08-09-2007, 09:26 PM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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My significant other gave me BOOBs for Christmas a couple of years ago... it is a great book. (He liked the name, of course!)
I too have found 2 support groups here of fun and positive women. One of them I was involved in starting, for younger survivors, called the Pink Ribbon Cowgirls. Only one of them is Her2Neu, but she is NED since first dx 2 years ago. The other group is Bosom Buddies. I plan to start going more regularly, but one of my dear local b/c friends is Her2 and it is a group that she has gone to for a few years - she LOVES it...
But this one, HER2SUPPORT, is the most profound one for me! So valuable. I take info from all of you smartie-pants and share it with my other support groups, my chemo nurses and my doc...
I tend to think that this group of ladies (and men) could actually save the world if we had the inclination...
__________________
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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08-09-2007, 11:31 PM
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#3
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Boobs
Dear Louise:
I received the same book from my daughter on my Birthday July 16, haven't read it yet, am sure I will enjoy it as much as you did..
There is a group for bc survivors (recurrent cancer) here in my town -Poway, Ca-San Diego area, it meets every 2nd thursday of the month @
a local hospital.
Today is the first thursday of the month, but couldn't attend cause my sister is visiting from Mexico. I will attend next meeting, I have heard great things about this group of ladies, who like me are experiencing a recurrence. I will tell you more after my first meeting.
Glad you found a support group near your area.
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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08-10-2007, 05:18 AM
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#4
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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I belong to a local group about 20 minutes away....the age rages from late 20's to the 70's...a very special group, although out of 40 members, I am the only Her2+++.....guess that is why I always come here first for info and help. The support group I belong to it called Hooter Pals.
__________________
"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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08-10-2007, 10:11 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Isolation except for her2support
Over the years there have been fits and starts of bc support groups here, and one started recently after 6 years without any, but there are no other known HER2's locally here either. This seems a little bizarre to me if it is true that 20-30% of all bc are HER2 positive. There have been other Alaskan HER2's online on this website that I've enjoyed meeting, but I would never have met them otherwise because I'm about 1,000 miles from where they are. We have Joe and Christine to thank many times over for helping us out.
Alaska Angel
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08-10-2007, 12:27 PM
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#6
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Louise and all
This is strange. I also belong to two support groups for bc and one had
no one Her2 or even knew what it was, in the other group one lady finally
joined but had no idea about Her2. Did I have a lot to tell her, and of course the first thing was about this group and all the knowledge here.
She was shocked that she was so uninformed.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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08-10-2007, 12:41 PM
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#7
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Senior Member
Join Date: Jan 2007
Posts: 368
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Sorry to say that we have no local groups either. The closest one is 50 miles away.
I have talked to women when I got rads and chemo, and most them didn't know what kind of BC they had, let alone what their receptors were.
They just blindly do what their doctors tell them, and don't question it.
Me- I want to know everything! I have copies of all my reports, scans, etc.
I do research, try to learn of new treatments in the pipeline, and I know I'm Her2 positive.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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08-10-2007, 03:11 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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No one in my local bc support group is Her2. Many of them did know what it was and they were all excited for me when I started Herceptin - especially 4 months after chemo and 2 months after rads (due to the 2005 ASCO meeting). However, none of them really knows anything and just let their doctors do whatever to them.
I loved this site as soon as I found it and have not turned back.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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08-10-2007, 06:28 PM
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#9
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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There isn't anybody in my group her2+. I'm the only one. I'm not even sure some of the new ones know what it is.
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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08-12-2007, 10:17 PM
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#10
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Senior Member
Join Date: Nov 2006
Location: Bedford, Virginia
Posts: 134
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This website is a Godsend. I only wish I had more time to spend to visit the website and read each and every thread. I work full-time, and I have a 5-year old grandson that lives with me and my husband along with his Mom. The grandson keeps me busy when I am home. He is also what motivates me to get well and stay well. He was such a trooper when I went through the worst of my illness. He was there when I had my hair cut down to a boy's cut. He laughed and giggled so hard that Grandma forgot about her vanity--at least for the day.
For those who haven't read the book entitled "Boobs." it is an excellent read. It makes a great gift for someone who is recently diagnosed. I read it while in the hospital after my mastectomy. The surigical oncologists team walked in my room, and they nearly lost it when they read the title.
Take care.
Louise
__________________
- Diagnosis 06/06 - Stage II-A BC; BC was 2.5 cm, grade 2; ER/PR negative & HER-2/neu positive;
- Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
- AC/Cytoxin combo - 4 treatments (dose dense);
- Taxol/Herceptin combo- 12 weekly treatments;
- Completed chemo - 2/07; completed restruction 02/07; reduction of left breast.
- BRCA 1 and 2 negative - 6/15/07;DX high risk for distant recurrence
- MRI, 08/02/07 - NED
- 1 year Anniversary - 09/07; completed Herceptin 11/07.
- Mammo 02/14/08 - NED; MRI - 08/2008 - NED
- 2 year Anniversary - 09/08
- Mammo 02/09 - NED; MRI - 08/09 - NED
- 3rd year Anniversary - 09/09
- 5th Annivery - 09/2011 - NED
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08-13-2007, 06:59 AM
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#11
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Oh My! I'm in Delaware and 4 out of 7 of the BC survivors in my Wellness Community support group were Her2 Pos. Is it something about Delaware???
__________________
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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