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12-12-2007, 11:15 AM
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#21
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Senior Member
Join Date: Aug 2006
Location: So California
Posts: 223
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very well said
Flori:
You said it all. This site has given me more information that I could have possibly ever gathered on my own. I can not even begin the imagine what life would be like without it. Sending lots of prayers out that things go well with you!
Lisa
__________________
Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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12-12-2007, 05:46 PM
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#22
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Flori I wish you the very best with this, I don't have mets yet and hopefully never will as I was one of the first here to avail of herceptin three weeks after it was approved for early stage bc.
I'm the type that likes knowledge, even if the worst never happens but like to be prepared in case it ever does and am the only one I know (from Ireland )or have seen from this country here. I've learned so much from you and all the member's here, my onc just comments " oh, you've done your homework"! not sure if she's vexed or pleased about that but I wanted to be pro active with my healthcare and with this disease and have learned so much from you, and this site and basically evryone here!
I know I still have a lot to learn, but what I've learned so far is things seem to be different in Ireland..people either seem to bury their heads in the sand or are just not computer savvy! i want to thank you, and Joe,Christine , and evryone else through this site that is helping to change all this here as i recommend this site to everyone I meet who is her2+ including newcomer's on Komen.
My best to you all and 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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12-12-2007, 06:47 PM
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#23
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Flori and all
This is a wonderful site with wonderful women and men and together
we will suceed in this, with all the knowledge we have been provided.
When I found this site, I found gold at the end of the rainbow, I had
no knowlege of all the types of breast cancer much less Her2. What
a wealth of information I found and thanks to you all that came before
me to provide me with this. Knowledge is power. Thanks Flori and all.
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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12-12-2007, 11:52 PM
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#24
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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So glad you have a new oncologist with a new treatment plan. You are a very insprational lady. Thank you for the update and you will continue to be in my prayers. Hugs and blessings.
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12-13-2007, 09:41 AM
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#25
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Right On Flori!
You have said it all, and very eloquently I might add. Thank you for your post and of course, all my prayers that your treatment plan will yield great results.
We are certainly united in this fight and so very blessed that Christine and Joe have brought us all together.
Love Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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12-13-2007, 11:57 AM
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#26
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Senior Member
Join Date: Jun 2007
Posts: 49
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I owe a great debt of thanks to Joe and Cristine for this site and for the knowledge that I have taken from the members of it. As far as I am aware, there is no site in the UK dedicated to HER2 and sometimes I think that I know as much(maybe more?) about it than my onc.The only advice that I have ever been given regarding diet, exercise or supplements is to"go and get on with my life"!! I have changed many things thanks to advice from this site.I do not post much but read almost every day.My thanks and best wishes to you all.
Nancy
__________________
Found lump myself 8 months after routine mammogram.
29/11/06-WLE and then re-excision to get clear margins.
Tumour was 1.2cms; Grade3; Er+ Pr+ HER2 3+++; SNB negative out of 9 nodes.
Chemo was Epirubicin every 3wks x4 then Xeloda (2wks on, 1wk off) for 4 cycles. ( I am part of the TACT2 trial.)
Rads x25
Arimidex for 5 yrs.
Hoping to start Herceptin within the next 2 weeks (we have to follow the HERA protocol to qualify for Herceptin in the U.K.) I worry about the delay in starting Herceptin!! Started 8/10/07
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12-13-2007, 01:46 PM
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#27
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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
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May Blessings Abound For You, Flori!
Oh sweet Flori! You are a walking advertisement for this fabulous HER2 Support Group. Reminding us all how blessed we are to have found it. And one another!!Giving us access to more information about bc and HER2 than we ever wanted to know (before) -- and need to know (now). We each understand one anothers angst and fortitude and are keenly aware that we need to be informed, proactive and empowered! We must personally participate in our own wellness. We must accumulate a team of the best advisers, armed w/knowledge and our ability to hear our Inner Voice.
You, my 11 yr Survivor/Warrior Woman Friend and Sister, exemplify everything a Winner must possess. Attitude, medical awareness across the board (from power ports to clinical trials and cutting edge protocols to supplements and any and all integrative therapies). You epitomize a Winner's stubborn resolve, determination and clear, focused and passionate intention! Plus, you've got one great sense of humor to bring joy and laughter to your life, while entertaining all of us! That's a gift! And each of these attributes is essential in order to prevail.
I was dx in '95, met in '98, and am sticking w/my life-saving Herceptin -- in my 10 yr now. Vit H (thanks to Slamon an Pegram and the rest of their team who developed it) is helping me be a Survivor too -- for 12 yrs. I'm just ahead of you, Flori, my Sister! ANNOUNCEMENT: Had my every 6 mnth CT scans this AM -- and am here to report -- chest/abd/pelv are STABLE, STABLE, STABLE. Still NEMD. Thank God. Forgive me for sharing my good news. I expect your good news to soon be posted and I will cheer for you!
So Flori you just keep on being YOU, with your feisty Spirit and kick a** tenacity. You knew it was time to move to a highly aggressive onc for your aggressive, insistent bc, as difficult as that decision had to be. Well, it's met it's match -- w/the deadly duo (your new onc and YOU). There is no other possible outcome for you now but success!! May it come swiftly and w/the least amnt of side effects.
You know I love you.
What the heck is an IHC from T-Gen? I'm just asking... Educate me, please.
MAY BLESSINGS SURROUND YOU NOW AND ALWAYS, as you so artistically and poetically post from La La Land, Flori, Flori, morning glory! AMEN, indeed.
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...
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12-15-2007, 03:08 PM
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#28
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Post Script
Flori I printed out your post, made copies and distributed them here in San Antonio. I explained to them that it exemplified what the HER2 Support Group was all about. In the last 6 years we have had over 1 million visitors, 100,000 posts and replies and our pages have been viewed over 5 million times.
The knowledge here is the combined efforts of all those who are on this site and for those who passed through.
December is an emotional month as it was here at San Antonio where we said our final farewell to Sandy and we lost our "love and light" later that month.
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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12-15-2007, 03:40 PM
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#29
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Flori's post could have been presented here at the SABCS as a poster session, or even a non-scientific general session - as much as the very proud Joe has shared it here the last few days! LOL. It is so powerful. It speaks directly to a very strong undercurrent (and maybe not so "under") that I have heard in every presentation I have sat in on, which is the tremendously strong trend and necessity in cancer treatment for personalized, individualized treatment... directed by more focused testing availability, more identified genetic markers and pathways, necessary multi-targeted pharma approaches depending on the individual's dx, and powerful patient involvement/voice/knowledge in the treatment protocol decision. It really sounds as if the oncology community is willing to embrace the research and knowledge that the patient brings to the table and that the research community is incredibly driven by the power of the patient advocacy community. This has been a powerful week for me, optimistic, reaffirming, and mind-boggling. Can I just say, WE ROCK here at Her2support!
__________________
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; 12-15-2007 at 10:38 PM..
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12-15-2007, 04:02 PM
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#30
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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
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Wow!
THANK YOU, BRENDA. YOU ARE OUR EYES AND EARS. You are every woman w/bc and especially all of us HER2 Sisters.
Your every word is anxiously received and felt deeply. As you are feeling reaffirmed, so am I, so are we all I would imagine.
Mind boggling must be an understatement. You are involved in such a remarkable experience, head spinning though it has to be. Thank you for so readily sharing...
Living energy to you and all,
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...
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12-15-2007, 10:35 PM
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#31
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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I'm damn near speechless after reading these wonderful posts. Flori, you're awesome and keep on rolling! Andi, I love your posts and your attitude. Joe and Christine, thanks for all you do. i wish I could have been here sooner, but Nikki was always here posting on different sites, but this was her favorite. This reminds me of a time several months ago when Nikki and I met with her onc. after we got the news about her brain mets and Nikki asked her "What do you recomend?" The doc said, knowing how Nikki was hands on in every aspect of her treatment, "Well, if it was up to me..., but I got a feeling it's not up to me is it?" We all laughed, knowing Nikki's reputation. She always had a list of questions and comments in her notebook, and like Joe said, the treatment system needs to be more of a partnership. Nikki's onc. said she liked us because we came informed and prepared and other patients just showed up and said,"well, do whatever you think is best". The doctors do their best, most of them, but as the warriors that you are, you must prepare for battle as best you can. I just wish I could be there to hug you all as you go to face it. Love, Bill
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12-15-2007, 10:50 PM
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#32
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Each one of us has a "vested interest" in the survival of another. I think that is what makes this website so unique.
Thank you Joe and Christine for your vision. Thank you too, to all those who are blazing the path for the "others".
Marcia
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12-16-2007, 01:33 PM
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#33
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Senior Member
Join Date: Jul 2006
Posts: 869
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You go Flori, BRAVO to you-yes, you are an inspiration. KEEP THE INFO COMING! Ceesun
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