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03-23-2007, 08:26 AM
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#1
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Senior Member
Join Date: Oct 2005
Location: Minneapolis, MN
Posts: 189
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OK, I agree, but....
I agree with all of you that Elizabeth Edwards is acting in a manner to make survivors proud. However, for the past 2 1/2 years, I have seen the same spirit of courage, determination, strength of character, intelligence and source of hope right here on this board. I have seen you put your husbands and children first and fight for them if nothing else. And I have also seen them love you and fight for you with all they have (Al, Mel, John, Tom to name a few). I come right here every time I need to see an example of heros. I also come here with questions, fears and concerns even before I go to my onc.
The only difference between her and you all is the tv cameras.
God Bless,
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Cheryl
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03-23-2007, 08:44 AM
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#2
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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woke up thinking the same thing
You said it Cheryl. I'm always compassionate for anyone with this disease at any stage and I sadly welcome the new sister in Elizabeth Edwards. But WE are collectively an amazing group of women and men with fantastic support systems and WE are worthy of that acknowledgement from each other, to each other and for each other.
-just sayin'
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with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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03-23-2007, 08:46 AM
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#3
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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oh, and just for the record...
i don't want tv cameras.
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with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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03-23-2007, 09:01 AM
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#4
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Amen.......................
You are echoing the discussion that I had with Christine last evening.
Warmest Regards - TO ALL MY HEROS
Joe
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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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03-23-2007, 10:13 AM
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#5
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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YES, we are all LIVING examples of courage under fire.
I do think that someone in Elizabeth Edward's position can do so much to change the general public's perception of Stage IV disease precisely because she is such a very public figure. Literally millions of people will be watching her and marvelling, and that will translate into the people we interact with in our daily lives perhaps being a bit less taken aback when we share our stories, and more understanding of how it is we can manage to live positively.
People who are new to our aquaintance are almost always somewhat shocked, sort of at a loss for words, etc etc, when we share my condition. Then after we finish with the little "Recurrent Cancer 101" tutorial we've developed, they're ok. I'm glad to be an ambassador, but it'd be encouraging if more people were aware of the changing face of cancer. Less "shock and awe" would be nice!
<3 Lolly
P.S. My comment about less "shock and awe" is not meant in any way to diminish what we do to live our lives day to day. I do, however, think that more awareness of how many of us live with recurrent cancer would serve to channel more dollars into support and research, a cause dear to all of us.
I hope to be helping with fund-raising efforts for a new integrated cancer-care center in our community, and I really feel that donations will be helped along by the understanding that these new centers will be providing supportive care for more and more recurrent cancer survivors, and that's a powerful message that someone like Elizabeth Edwards can help convey.
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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03-23-2007, 10:43 AM
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#6
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Amen to all of the above!
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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03-23-2007, 11:18 AM
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#7
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Senior Member
Join Date: Nov 2005
Posts: 943
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Yes, this is an amazing board of women. What a wonderful place to be for support at her2support or what I often think of as hero support--"herosupport"!
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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03-23-2007, 01:46 PM
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#8
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Senior Member
Join Date: Aug 2006
Location: Franklin, MA
Posts: 131
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Being a Stage 4 person, it saddens me that another woman has joined our club. But I agree with all of the sentiments above - we don't have to look any further than this site for inspiring stories from other people who are LIVING with Stage 4 every day (and who plan to keep on living!!). When ever people ask how I do it with 2 small chlidren at home, I just tell them that you do what you have to do to live to tell about it!
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Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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03-23-2007, 02:14 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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I agree...when I first heard I had her2 positive bc and googled it I was terrified.
That is,until I came here and learned so much from all the brave members of this site the true meaning of being her2 positive...that life can and does go on.
It gave me confidence and made me determined to fight as much as I could to get though the treatments as much as I could. If by chance I do have a recurrance yes I'll be shocked and upset but no longer believe it's a death sentence as I did in my ignorance when first diagnosed.
Thank you all, and to all those who have had a recurrance I applaud and thank you for teaching the rest of us early stager's how to live and enjoy life even as stage iv.
Blessings to all
__________________
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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03-23-2007, 02:22 PM
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#10
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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High 5's you all!
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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03-23-2007, 02:30 PM
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#11
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Senior Member
Join Date: Jan 2007
Posts: 72
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Here, Here!
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12/01/2006 Initial Dx via stereotactic biopsy - DCIS, grade 3
12/27/2006 Lumpectomy w/ SNB: 2 foci of IDC (largest .3 cm, Grade 2, Notthingham score 6) amid large area of DCIS: No clear margins on the DCIS; re-excision recommended
ER+(55%)/PR+(60+)/HER2+ (2.8+ via IHC?)
01/23/2007 Re-excision Lumpectomy: No clear margins on the DCIS; mastectomy recommended
03/02/2007 Bilateral mastectomy w/ expander implant insertion
03/19/2007 Emergency surgery to fix broken blood vessel in left breast
03/30/2007 Met w/ oncologist; oncologist checking on HER2 status with pathologist and doing some consulting on my case - no treatments for now!
05/02/2007 Next appointment w/ oncologist
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03-23-2007, 03:47 PM
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#12
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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I agree, and only the ones involved on this board really understand us. My friends are just blown away that I spend as much time on this board as I do. Its like another family and having been there you all understand me better than my biological ones do! Some of my friends, even though I have explained it to them, think its just a place where I go to play games, and kill time!!!! But than when I share a piece of info they will say where did you ever find that? So I tell them off the her2 board. Than they may say, "oh thats not what I thought it was for. The wonderful thing here is no cameras, no judging, don't need to have money, and we are all here to help each other, regardless of race or color. Praise God for Joe and Christian truly angels sent by him to be there for us. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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03-23-2007, 03:48 PM
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#13
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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I'll toast to all of this. Each one of us are amazing!
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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03-23-2007, 03:57 PM
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#14
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Senior Member
Join Date: Jan 2007
Posts: 138
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You wrote exactly what I was thinking. Thank you for having the courage to do so.
Hugs,
Karen
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03-23-2007, 06:42 PM
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#15
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Senior Member
Join Date: Nov 2006
Location: West Virginia
Posts: 105
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And for the record....
...This group of women, whether they had ever been diagnosed with breast cancer or not, are some KICK A@# role models....I know, not so eloquent but I was really, really feeling it!!!!
You guys are awesome!
Steph C
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03-23-2007, 09:57 PM
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#16
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Yes....Yes....Yes...
We are a unique and extremely special group! (Becky and I had lunch and said this very thing on Tues.)
When ever I am missing in my house I can hear my husband or son
asking, "Where is she?" one or the other will say, "I'll bet she is on the
Her2 board." I come often for comfort and knowledge each day,
a few times a day sometimes. When I am busy busy and get in
late I can't go to bed without checking in and making sure everyone
is doing well. I feel like I know each one and keep you in my prayers
each day. Yes, you all are like a family for me.
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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03-23-2007, 10:49 PM
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#17
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Senior Member
Join Date: Feb 2007
Location: California
Posts: 27
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Good Evening all..... Our local ABC affilate called our local chapter of the american cancer society and wanted to run a story on our local women fighting breast cancer and the american cancer society called me up to do the interview...of course I wanted to talk about it and my background is marketing so I went.... and I felt very honored to represent "our" group... My main focus was based on getting my diagnosis... because they had assured me that it couldnt be breast cancer because I was too young, no family history, and breast cancer didnt hurt.... I took this oppurtunity to tell everyone who was watching.... That cancer has No bounaries, No limits and wasnt prejudice... and that it COULD happen to you... be your own advocate..... you have the right and you owe to yourself to get that 2nd opinion..... it might save your life. I am 31, have NO family history and my first sign and only for awhile was pain in the breast..... if that helps one woman think twice that would make me happy. You all are awesome... and thank you all for the support of "our" group....May God bless you all!!!
__________________
Tricia Velasquez
Bakersfield, Ca
dx Jan 4 2007
er+/pr- her2 +++ Stage 3b
several tumors
largest 7cm
port placed on Jan 18, 2007
Chemo started Jan 22, 2007
Herceptin/ Taxol every 3d week and then my Dr changed me to Taxotere/Carboplatin/Herceptin
every 3d week
Right Mastectomy w/ Lymph Node Dissection 4/19/07
27 removed 9 positive
Margins-clear but wall to wall
Radiation scheduled for 6/07
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03-24-2007, 04:41 AM
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#18
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Hi everyone
I am only remotely aware of Elizabeth Edwards - a 2 sec flash at the end of the news a couple of days ago here in Australia - and I feel sad that another woman has to endure this disease. But I agree - you are all having such an impact on the community of people affected by BC and HER2BC, and your imact is immense for the community and cameraderie that comes from your sharing and support - I am glad you are here and this website is here for us all.
Belinda
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Belinda
- Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
- Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
- May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
- March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
- Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
- January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
- Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
- Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
- ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
- Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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03-24-2007, 04:54 AM
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#19
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Member
Join Date: Feb 2006
Posts: 16
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My sentiments exactly-I was deeply saddened that she recurred-but that would be for anyone.I also know that I would be very upset if I had cameras in my face while trying to beat back the beast-
I love this board and all the people on it-I don't post much but I am on everyday and it helps me tremendously-Diana
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03-24-2007, 07:40 AM
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#20
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Senior Member
Join Date: Mar 2007
Location: SW Virginia
Posts: 50
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I come to this board every day too since joining earlier this month. I don't have much to contribute yet as a "newbie", but the wisdom of the women on this board helps me so much. I have gotten private messages from several women too and I appreciate that so much.
Great job Tricia on getting the word out about BC not being a respector of age.
God's blessings to all of you!
__________________
Susan in VA
Determined to be a VICTOR not VICTIM - by the grace of God!
DX 2/8/07 at 48
1.75 cm IDC in left breast, Stage 1
Grade 3, ER-/PR-/HER 3+
Lumpectomy 3/7/07, 5/5 nodes clear, clear margins
Starting TCH on 4/9/07, every 3 weeks X 4 treatments - Completed on 6/12/2007
33 rads to began 7/2/07 and completed on 8/22/07
Herceptin every 3 weeks until April '08
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