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12-01-2007, 06:50 PM
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#1
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Senior Member
Join Date: Oct 2007
Posts: 47
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I join R.B!!!
Patrice
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12-01-2007, 09:29 PM
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#2
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Ditto for me - Hail the ADMIN!!
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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12-03-2007, 11:07 PM
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#3
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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My thank you to Joe and Christine. I have learned from and shared this site with friends who needed information and support. I mailed my modest contribution 2 weeks ago. It is not about the money, but it is my way of contributing more than just by typing.
Love to all, Catherine
Pox on the spammers
__________________
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
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11-22-2007, 02:38 AM
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#4
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Senior Member
Join Date: Apr 2006
Posts: 148
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I am a member of a UK breast cancer site where I derive much comfort and support, as well as giving it.
However, it is here where I come to find out all the latest news on HER2. This I then give to my medics in the hope that they will take notice.
So thank you from me, too. I genuinely believe flaxseed is an important natural inhibitor of HER2+ cancer, and this I learnt here.
Mcgle (UK)
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11-22-2007, 03:46 AM
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#5
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Senior Member
Join Date: Apr 2006
Posts: 131
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Dear Joe and Christine:
I don't post often, but I do regularly read the posts.... I just want to say, I am so very happy to have found this place.. I want to add my thanks for such a place to ask, receive and get support. and advice from the great folks here..
The work you do is so very much appreciated...I thank you and Christine from the bottom of my heart.... please know that your work is appreciated...
I also would like to make a donation to the site.... I can"t get the link to work...On one of the posts, an address was mentioned.. where do I find that??? Could somebody help me.??? I guess I have chemo brain...???.
again, thanks so much for this site.. I have taken some of the posts to my Dr. and he sat there and read them .
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11-22-2007, 04:33 AM
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#6
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Senior Member
Join Date: Sep 2005
Posts: 414
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Hope you have a Happy Thanksgiving
Dear Joe and Christine,
I am very thankful for this site. I think that people don't fully appreciate the market value of the services you donate. I donate to a cancer support charity in the UK and they mentioned in their recent mailing how much it costs per hour to keep their website up and it was quite expensive (wish I could find it now, but no such luck). And the great thing about this group is that there isn't the us/them divide that you get with some chatrooms where the organisation leaders, who may be charity professionals rather than cancer survivors or people living with cancer, don't always seem to understand what things are like for people with cancer.
I hope that you have a very nice Thanksgiving.
Best wishes,
Christine MH
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11-22-2007, 04:52 AM
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#7
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Senior Member
Join Date: Sep 2005
Posts: 414
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I hope you have a nice Thanksgiving Day
Dear Joe and Christine,
I am sorry to hear that some people have been disrespectful.
Recently I received a mailing from a cancer charity I support in the UK and was shocked to learn how much it was costing them an hour to keep their website up. I had never really thought before about how much a website like this one costs to run. It made me really appreciate all that you do.
I guess the thing that I think is so great about this website is that it is run by people who have been directly affected by cancer. Charity professionals are great, but sometime they don't always understand where we are coming from. Also, that this website does so much to help defeat this type of breast cancer by publicising trials and new developments.
I hope that you have a great day with your family.
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11-22-2007, 05:10 AM
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#8
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Thanks wholeheartedly to Joe & Christine
I think I know which thread Joe deleted. I replied to it before the comments fired up. Have not been able to follow the last couple of days, but it WAS getting beyond "polite discussion."
The empathy and civility of the members here has always been one of this site's hallmarks, and I am glad to see that we do not NEED monitoring as a matter of course. The fact that Joe can feel at liberty to go about his business and trust that what is taking place here is non-threatening to anyone, yet honest, is a testament to the members.
We all come from different places and backgrounds to arrive here at a commonality with a terrible disease. Naturally we all have opinions on most everything, and our own ultimate truths, which may or may not be open to change. The only change we should be thumping for is a CURE!
__________________
"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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11-22-2007, 05:57 AM
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#9
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Joe and Christine
I have been a member of this group for over 4 years, and I have seen differences in opinions, ideas etc. It is OK to have our opinions, we are all unique, as is our breast cancer...what works for one, won't work for another...one is taken and yet another lives on....but in all of this, we must never forget the reason this board was started by Joe and Christine...to help each other....with respect, knowledge and genuine compassion. This board has been a lifeline to me, don't know where I'd be without it.
Thank you Joe and Christine ...you are a lifeline
__________________
"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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11-22-2007, 02:10 PM
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#10
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Thank you Joe and christine, I don't post as often because of the remarks that are at times so very hurtful. And my husband suggested I drop out of this site because of it, but I have always been a believer in the goodness of all. Thank you for your concern and for taking a step toward ending the bitterness. Much love, Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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11-22-2007, 05:21 PM
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#11
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Thank you, thank you, thank you! I've learned a lot from everyone here!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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11-22-2007, 07:51 PM
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#12
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Thank you Joe and Christine.
Mary Jo
__________________
"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
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11-23-2007, 07:53 AM
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#13
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Senior Member
Join Date: Jan 2007
Posts: 144
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Where would I go?
Joe and Christine- I am sure you both must know that this board has "saved" so many women from the terror and fear that HER2 breast cancer can cause. I am a case in point. Without this board I would feel unarmed and ignorant of the knowledge I need to fight this never ending battle. I too, have tried the link to make a donation and been unsuccessful. I will try to find the address since someone mentioned it.
I would like to say "Thank you" from the bottom of my heart for allowing me to come to a place that can give me peace, love, knowledge, courage, and faith that we are going to beat this disease.
I don't know what thread you are speaking of, but I hope we can all remain calm, and focus on the purpose of this board.
Thank you again Joe and Christine for being there for all of us.
Happy Holidays to all,
Emelie
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11-24-2007, 07:54 PM
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#14
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Senior Member
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
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Please everyone --- not another word!
Andi,
Obviously this has had a major impact on you. I am very sorry for your being hurt and feeling vanquished.
I know you realize that those who say ' *I don't care* or *I am glad I missed it*! ' are referring to missing any inappropriateness that was posted. I missed all of it, but now it is time to put the whole thing to rest. Although the posts were removed from this site, we all need to accept the fact that none of us can change or erase what occurred. Think of it as merely politely vanished for the benefit of many, and not vanquished. I'm absolutely sure your beliefs expressed on this site have not gone astray. It is time to move on.
God grant me the
Serenity to Accept the things I cannot change ; the
Courage to Change the things I can; and the
Wisdom to Know the difference.
Where is the world is Chinese Hamster Tip-Her2? I wonder where she went for her2rkey on Thanksgiving?
Joanne S
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11-24-2007, 09:23 PM
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#15
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Sorry. I think I missed most of this. I have been trying to piece together. I wouldn't mind leaving many of these posts up to further discuss. So without seeing it I can't comment. BB
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11-25-2007, 12:01 AM
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#16
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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TipToe's schedule is posted under the 'Keeping your mind off of B/C" Forum...
__________________
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."
Last edited by hutchibk; 11-25-2007 at 12:03 AM..
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12-05-2007, 09:57 PM
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#17
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hello All! My name is Bill Stewart, Nicola's husband. I am still trying to learn my way around the site, but as I do, I am amazed at the number of beautiful smiling faces I see that I recognize. My incredibly courageous wife, Nikki, passed away a few months before we expected her to, and left me with the heartwrenching task of trying to locate friends that may have been left hanging with no information. I apologize. I have been trying to learn this site adequately so that I may make a posting for all to see, but I'm not sure I have found it yet. I know she loved you all, and spent a lot of time reading and posting here.
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12-05-2007, 10:12 PM
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#18
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Nicola's husband Bill here, I got here late, too late to comment on the inflammatory situation, but as those of you who knew my fiery redhead would agree, she would be writing pages and pages putting people in their places. She loved this site and loved you all.
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