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11-21-2007, 02:54 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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"PLEASE" don't take Joe and Christine and ALL their work here...
for granted as I don't want to lose them. Prior to becoming diagnosed, the ONLY other message boards I had belonged to were Organized Home and Organized Christmas (don't ask...we ALL have issues  and a couple of months ago, the "owner" of the sites (such as Joe and Christine are to this one) announced that the message boards would be shutting down effective 01/08 due to the amount of time it takes to maintain them as well as health issues. You should have SEEN the hysteria...(imagine this board shutting down). Like Joe says, we are "guests" in HIS and Christines home and the gracious host and hostess that they are...think about it.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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11-21-2007, 03:10 PM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Thank you Rhonda. Before this I never belonged to organized message boards either. I belong to one other now that has nothing to do with medical issues or health. I have seen on that one, just how easy it is for simple differing points of view to disintegrate into meanness and immaturity. It is surprising and disenchanting. It makes me sad to hear that on this site, the same has might have also started to come true. I did not read the thread in question, so I must take Joe at his word that it had crossed the line. I am here to survive cancer, gain knowledge and experience, share knowledge and experience, and sometimes have fun, but hopefully always have respectful adult discourse. I hope I have done my part to use this site wisely and appropriately. It is much too powerful and important to risk losing it.
__________________
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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11-21-2007, 05:58 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Thanks for the reminder Rhonda, I belong to one other message board where I have friends but no knowledge!! I rely on this board to provide that as it's always done for me since dx in '05.
I believe knowledge is power in beating this disease and Joe and Christine provide the outlet for that.
We have nothing else like this in Ireland, and when I mentioned the site to my onc who trained and worked in the states she knew of this site and was glad I visit here.
We ALL need this, I don't know what happened and did'nt read the offending post but JOE....please know it's one of among hundreds that truely appreciate you and Christine and what you're providing for us here.
Thank you again!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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11-21-2007, 07:36 PM
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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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THis is the only message board I have ever belonged to, or ever wanted to, although your organized Christmas one sounds interesting Rhonda! This board has been a lifeline, don't know where I would be without it...it is my link to knowledge and hope....no matter how down I can feel, I can always feel better by coming here. Christine and Joe have given me 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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11-25-2007, 12:03 AM
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#5
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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This is also the one and only message board I have ever joined. It has been a tremendous blessing to me throughout my ordeal with BC and treatment. Could someone please explain to me the relationship Joe and Christine have to this message board? It sounds like they are the deveoper of this site? I would really appreciate a good understanding of the correlation so that I can be 100% appreciative to the work they have done and are doing in helping so many of us.
Thanks...
Harrie
__________________
*** 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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11-25-2007, 04:04 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Harrie...
here is a link explaining Christines story.
http://her2support.org/index.php?opt...d=67&Itemid=80
She and Joe are the founders and owners of the HER 2 Support Group. My HOW SWEET thread is a picture of them. Their BEYOND phenomenal.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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11-25-2007, 12:28 PM
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#7
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Senior Member
Join Date: Jun 2007
Posts: 216
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Joe and Christine, please keep this message board going. Its the only one I look at and get great up to date information and a lot of encouragement from. There is nothing like this in England where I live. Thank you so much for this .
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11-25-2007, 01:41 PM
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#8
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Thank you Rhonda...........
Thank you Rhonda for the gentle reminder to us all. Yes, we are guests in the "home" they have created for us and we should never take that type of love for granted.
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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11-27-2007, 08:27 AM
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#9
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Dear Joe and Christine,
Know that you are EXTREMELY appreciated and if anyone is taking you for granted, they're an idiot. I posted my feeling on another post about impoliteness and the fact you were feeling discouraged. Please never feel discouraged, you mean so much to all of us.
Personally and selfishly if this site stopped working, I would go into a deep depression and feel totally lost and I'm sure I speak for everyone. I turn to this board not only for advice for myself but for 2 follow travellers. Just the thought of you not being here, has frightened the daylights out of me! However it's made me decide to donate now instead of waiting until December! I'm also going to ask my bc buddy to send something - I know she will.
Also Joe and Christine, if you ever have the urge to visit France and want to head to the south of France, I live near Cannes and my husband and I would love to have you stay with us. We live in the country not on the "Cote" but it's still very nice.
Having often been a volunteer in the communities I've found myself living, I know that there are times you get overly tired and fed up and feel unappreciated.
Please re-find your passion - you are so desperately needed.
We love you.
Gary and Sarah
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11-27-2007, 09:35 AM
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#10
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Senior Member
Join Date: Aug 2006
Posts: 492
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I am sure I can credit my success so far in part to the information on this site and board.
What does it take to get funding for this organization? I don't want Joe and Christine to be burdened with more work. But if a board is elected and fundraising done so that they can be compensated for their time and effort in her2 bc- that would be just.
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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11-27-2007, 01:57 PM
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#11
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Junior Member
Join Date: Nov 2004
Posts: 2
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Dear Joe and Christine,
I want to thank you, once more, for all you have done for us bc- her2neu+ ladies.
Since I met you personally (last November) in San Diego, I admire your work
and dedication even more. I have not posted often, but I read this website almost daily and have received a lot of valuable information.
Please continue your good work and I wish you all the best.
Sincerely, Trudy
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11-27-2007, 11:15 PM
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#12
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Dear Joe and Christine,
I agree with the recent posts to this thread. I would have felt much more alone and vulnerable if it were not for the information and contacts I made through your site. I do not know what negative posts were made before to have cause such bad feelings, but if the positives and words of appreciation could somehow override the negatives, you have my deepest appreciation. Your site has been a godsend to me. Thank you.
Maryanne
__________________
*** 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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11-27-2007, 11:25 PM
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#13
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Wow, I just read Christine's story. Simply amazing and incredibly inspirational. Can anyone tell me how long this online site has been in existance? I am just curious.
Maryanne
__________________
*** 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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11-28-2007, 12:00 AM
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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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Joe,
I just love the 'giggles' billboard photo of Christine and you. Why not put it on the first page of the HER2 (home) site?
Joanne S
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