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10-21-2010, 11:12 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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October breast awareness-LA Times
You may not feel the same way I do, but I feel that the media obviously ignores us when it comes to information about HER 2+ and it simply upsets me!
Recently, the LA Times has written a couple of articles on breast cancer, barely naming our minority group.
I wrote the LA Times. Below is my email to them. Again you may not agree with me, but if we don't speak up, who will?
Although I appreciate the LA Times article on 10/20/10 and the fact that you mention the other group of non responsive to hormone treatment, I believe that the subject is totally ignored for the HER 2+ women in the media. It's completely obscured. A couple of weeks ago another long article was also published in the LA Times, also not addressing this group. When I mention to people that I have (had) breast cancer, they automatically assume is hormonal, becasuse that's all the media emphasizes.
Why my concern? Well, you see I am one of those HER 2+ women.
I would like the LA Times to write another article on that segment of the population only.
An article that is well researched and documented. We do not have the privilege of a pill to control our hormonal balances so to prevent cancer from returning. Some women get hormone treatment even on preventive basis, before a diagnosis of breast cancer. I don't have that at all to prevent my HER 2 + cancer from coming back. How would you like to be in those shoes? I pray that I could have a pill every day! We would like a vaccine that can control the over prodution of the protein.
I believe that 20-30% of women are affected by this factor. Why should the minority be ignored, until a few years ago till the use of Herceptin came along, we had no good prospects. Herceptin was approved in Europe before the FDA gave the approval here. How would you like to hear that if you in an advanced stage? Now we have Tykerb as well but again is not the same as for the other 80-70% of women.
Breast health awareness is for ALL breast cancers. My type of cancer needs more money for research. Grants are needed to allow researchers to look more into this side of breast cancer illness. We trash pharmaceutical companies for outrageous profits, the media never looks the other way, the consequences of not doing the research and bringing new drugs. The process for approval of drugs is long . Without future research, I will die. How would you like to live with that sword on your head?
Please be informed. Address all sides of the issues.
Consider asking the Avon Foundation and visit www.her2support.org for information. |
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10-21-2010, 07:56 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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Re: October breast awareness-LA Times
Good for you MCS... I agree that there must be more awareness for Her2+ BC... before I had it, all I had ever heard about was hormone positive.
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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10-21-2010, 08:05 PM
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#3
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Re: October breast awareness-LA Times
Way to speak up! And you are right, a lot of people know about breast cancer, but so many do not know about ours! Thanks for speaking up!
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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10-21-2010, 08:51 PM
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#4
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Senior Member
Join Date: May 2010
Location: New Roads, LA
Posts: 35
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Re: October breast awareness-LA Times
Thank you so much! I am a nurse, and had never heard of HER2 until I was diagnosed, along with 2 of my cousins!
__________________
Toni
Found lump...Oh, crap!
Dx 4/29/10
Invasive Poorly Differentiated Ductal Carcinoma. BRCA 1&2 no mutations(although 2 cousins also are HER2+)HMMM....
Stage IIB, G3
ER/PR -, HER2+++
5/11/10 Lumpectomy/Axillary node dissection/Mediport placement
Tumor 3.5cm, 1/15 nodes + Both Sentinel nodes negative!
6/24/10 - Started TCH.
10/14/10 - Finished chemo...yea!!!!!
12/27/10 - PET scan and MRI-NED!!!!!
03/09/11 - Bilateral Mastectomy and reconstruction (DIEP Flap)
03/16/11 - NED! Path report negative!
6/9/11 - Revision of both breasts, and port removed. Two lumps removed...both benign!
6/23/09 - LAST HERCEPTIN!!! Wohooooo!
My son Tim and his wife Nicole just had their first born...a son, Brayden...my first Grandchild! My daughter Hanna is working her way through college, and I am so proud! God has blessed me.
Update...as of 10/2013...still NED, and my son and daughter-in-law just had identical twin girls!!! They have blessed me with 3 beautiful grandchildren in 27 months!! Haha!
My beautiful daughter, Hanna, is still working toward her degree and working full-time.
God is so good:)
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10-22-2010, 03:03 PM
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#5
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Senior Member
Join Date: Sep 2010
Location: Northern California
Posts: 64
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Re: October breast awareness-LA Times
Very well written ...good for you!
__________________
41 Years Old
Dx w/IDC in August '10
No family history
ER+/PR-/HER2+
2.2cm tumor/Stage 2A
No node involvement
Tested negative for BRCA 1/2
Participated in a UCLA clinical trial testing TCH and/or Lapatinib in stage 1/2/3 bc patients that can be removed by surgery.
Underwent neo-adjuvant therapy to shrink tumor prior to surgery.
1st Surgery date: 2/16/11
Pathology report indicated ADH/DCIS in margin.
2nd Surgery: 3/21/11
Clean margins!
Started radiation: 4/11/11
Completed radiation: 7/8/11
1st post-surgical mammogram: 8/16/11 - CLEAR!
6 Weeks of Tamoxifen - Failure to Respond
Started Lupron/Arimidex: 8/29/11
Herceptin until September '11
Recurrence - August 2018
Same profile - ER+/PR-/HER2+
Undergoing neo-adjuvant therapy prior to surgery;
Gemzar, Carboplatin, Herceptin & Perjeta
Chemo through the end of 2018...
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10-22-2010, 05:25 PM
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#6
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: October breast awareness-LA Times
Nice Job---thanks for taking the time to do this. We are talking about the LA Times you know----I don't think they will followup but I hope they surprise me.
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10-24-2010, 09:06 PM
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#7
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Senior Member
Join Date: May 2010
Location: New Roads, LA
Posts: 35
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Re: October breast awareness-LA Times
Maybe we should all be writing our major papers.....and Foxx
__________________
Toni
Found lump...Oh, crap!
Dx 4/29/10
Invasive Poorly Differentiated Ductal Carcinoma. BRCA 1&2 no mutations(although 2 cousins also are HER2+)HMMM....
Stage IIB, G3
ER/PR -, HER2+++
5/11/10 Lumpectomy/Axillary node dissection/Mediport placement
Tumor 3.5cm, 1/15 nodes + Both Sentinel nodes negative!
6/24/10 - Started TCH.
10/14/10 - Finished chemo...yea!!!!!
12/27/10 - PET scan and MRI-NED!!!!!
03/09/11 - Bilateral Mastectomy and reconstruction (DIEP Flap)
03/16/11 - NED! Path report negative!
6/9/11 - Revision of both breasts, and port removed. Two lumps removed...both benign!
6/23/09 - LAST HERCEPTIN!!! Wohooooo!
My son Tim and his wife Nicole just had their first born...a son, Brayden...my first Grandchild! My daughter Hanna is working her way through college, and I am so proud! God has blessed me.
Update...as of 10/2013...still NED, and my son and daughter-in-law just had identical twin girls!!! They have blessed me with 3 beautiful grandchildren in 27 months!! Haha!
My beautiful daughter, Hanna, is still working toward her degree and working full-time.
God is so good:)
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10-25-2010, 06:44 AM
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#8
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Senior Member
Join Date: Oct 2010
Posts: 123
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Re: October breast awareness-LA Times
MCS,I know the feeling,but I have recieved Cure magazine since I was dx'd in Feb 2009.. www.curetoday.com it has quite a few
issues on Her2+ cancers,yes it would be nice if we were recognized,this is why I always come back to Her2 support!
__________________
found susp.lump Feb 2009
DX Feb 2009 ...Her2+ stage IIa ER/PR- grade 3
partial mast. Right breast,clear margins
chemo (2) carboplatin & Taxotere
could not finish chemo (hospitalized because of infection)
37 rounds radiation
Herceptin (1 yr.)
No clinical trials
Jan.2011 BRAC 1/BRAC 2 Neg
Aug.2011 clear bone/catscan NED
Apr.2012 clear digital mammo
& ultra sound of breasts
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10-25-2010, 11:44 AM
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#9
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: October breast awareness-LA Times
MCS,
I applaud your initiative to write the LA Times. The majority of your email was great stuff. The only concern I have is the dramatic ending about the sword on your head & similar comments.
We should direct our anger at the real enemy: Cancer.
In order to educate the public about Her2 breast cancer we might not want to risk putting a potential source of help on the defensive.
I think your idea to contact the Times is awesome. Are you helping to get the word out on the FDA decision not to FastTrack TDM1?
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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10-25-2010, 12:10 PM
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#10
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: October breast awareness-LA Times
A local publication here had an article on survivors and it misquoted one of them regarding HER2 cancer. I wrote to the editor suggesting that they get facts checked by a professional before they print them.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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10-31-2010, 01:03 PM
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#11
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Am I stupid?
Breast health awareness is for ALL breast cancers. My type of cancer needs more money for research. Grants are needed to allow researchers to look more into this side of breast cancer illness. We trash pharmaceutical companies for outrageous profits, the media never looks the other way, the consequences of not doing the research and bringing new drugs. The process for approval of drugs is long . Without future research, I will die. How would you like to live with that sword on your head?
I may have taken the above quote out of context, however...am I stupid to not think that I am going to die because of my HER2 DX??? I am commenting on the letter to the LA Times. Am I stupid thinking that my through treatment with chemo, surgery, radiation and a year of Herceptin gave me a very decent chance at "long" time survival? Yes, more reserach and more info about HER2 DX would be wonderful, but in the meantime...do others think they are going to die?
Sorry to be so frank with this question, but this statement scared me. Please let me know what you think. Thank you in advance for your comments. I am not propeller head.
Greetings to all, Catherine
__________________
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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10-31-2010, 01:22 PM
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#12
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: October breast awareness-LA Times
MCS,
I applaud you taking the time and effort to object to something you feel strongly about, however, I may be in the minority here, but I believe her2 cancer is getting more of it's fair share of research and media attention.
While one time it would have been a death sentence to know one was her2+, I think this is not the case now, and has become the opposite ,and although I am also hormone pos, I don't equate that to my her2 survival at all but feel we have herceptin to thank for this.
I once read the term here that we now have what is "The sexy cancer" as huge amounts of funds and trials are going into her2 and I agree.
To answer Catherine, I also am thankful for any new research of course Catherine, and while I don't expect to live forever, I do expect many more years of survivorship ahead thanks to the aggressive treatment and herceptin I had as early stage!
Just my own opinion of course, in any group of bc patients my sympathies lie more with those triple neg ladies, although the PARP trials are helping these people really do only have chemo to rely on for now.
I think we are fortunate and I'm thankful for all those brave women who participated in the early herceptin trials to make it possible for me to have had it when dx 
__________________
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!
Last edited by tricia keegan; 10-31-2010 at 01:24 PM..
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10-31-2010, 02:09 PM
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#13
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Re: October breast awareness-LA Times
I'm confused about the 'hormone' part. This sounds like
all Her2+ cancers are hormone receptor negative ... that's not
the case.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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10-31-2010, 03:52 PM
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#14
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: October breast awareness-LA Times
I agree Pink, I'm highly triple pos, but still feel my hormone status has no bearing on my her2+ and is a seperate issue.
In saying that, I'm grateful to have had herceptin and arimidex to help me after treatment to avoid a recurrance.
__________________
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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10-31-2010, 05:31 PM
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#15
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: October breast awareness-LA Times
MCS, you ROCK!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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10-31-2010, 09:57 PM
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#16
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: October breast awareness-LA Times
MCS,
I think you started a good trend. I'm sure our local papers are looking for good stories.
I knew nothing about breast cancer before I was diagnosed. We could all write our stories and share our own experience with cancer.
We could take the work Joe has done on the website on step further and let others know we are here. We can let the public know what we need to advance treatment.
Let's turn our anger and frustration into a focused and constructive force.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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10-31-2010, 10:14 PM
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#17
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: October breast awareness-LA Times
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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11-01-2010, 06:51 AM
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#18
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Re: October breast awareness-LA Times
Thanks Jackie ... that's a much better article. We certainly
don't need to be 'pitting' breast cancer patients against each
other regarding who has an 'easier go at it'.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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11-01-2010, 07:54 AM
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#19
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: October breast awareness-LA Times
What an excellent source of information. I've even learned some new things.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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