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05-02-2010, 04:40 PM
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#1
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Member
Join Date: May 2010
Posts: 13
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Always Herceptin for Her2+
Hello! I know no one can diagnose or tell me anything definitively here, but I hope you can give me some insight. I am new to this journey. I found out on 4/7/10 that I have IDC, Stage 1 (hopefully), Grade 3, and am ER/PR+ and Her2+. I've done a lot of research since then and am so glad to have found this site. I am post menopausal and am wondering if everyone who is Her2+ has Herceptin with adjuvant therapy. I don't know how much pre/post menopause plays into the picture. I just want to know what is ahead of me. I haven't met with an oncologist yet, and my surgeon said that won't happen until after my surgery. My friend always tells me I'm a planner, and I don't think I believed her until now!
I would appreciate any input you might offer. Thanks everyone!
Nance
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05-02-2010, 04:53 PM
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#2
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Senior Member
Join Date: Apr 2010
Location: Louisiana
Posts: 53
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Re: Always Herceptin for Her2+
Hi, I am new to this, also. I found out April 1, 2010 that I have HER2+++, ER+ PR-. I am scheduled for a bilateral mastectomy on May 10 in Little Rock. I have not been assigned to an oncology physician yet. I am 57, very healthy, and recently widowed. The only thing I can figure into this is my diet which consisted mostly of dairy products, coffee, and sweets; all of which seem to be fuel for hormonal cancer from what I've read. Needless to say, I have gone cold turkey on these foods! I'd love to know what's in store for me, too. God Bless you in your journey.
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05-02-2010, 05:05 PM
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#3
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Member
Join Date: May 2010
Posts: 13
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Re: Always Herceptin for Her2+
Hi KKLouisiana,
I'm sorry we have to join this journey, but we certainly seem to be in good company. I know estrogen positive can be related to fat. I, too, get my share of caffeine through pop (soda) and chocolate. I need to change my ways and give you a lot of credit for going cold turkey. Good for you!! I'm sorry you have to go through this without your husband. I'm here if you need to talk ever. I am having a lumpectomy on the 21st of May. They wanted to operate on the 20th, but I told them I wanted to enjoy my birthday cake  I don't think Her2+ is related to diet or other factors we can control. Please keep in touch. My prayers are with you!
Nance |
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05-02-2010, 05:29 PM
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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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Re: Always Herceptin for Her2+
Treatments for HER2 Positive Breast cancer are always evolving. Here is what I believe is the " latest Data" on treatment.
The really great news is that when this website was launched in 2001, HER2 positive bc was regarded as a death sentence. If you tested positive, your oncologist usually told you, "your cancer is very agressive, with a poor prognosis, but I'll keep you alive as long as possible" Words of no comfort.
In the last 10 years truly remarkable progress has been made. MD Anderson released a study last year showing that HER2 positive patients actually survive longer than those who test positive.
The key to success is to empower yourself is to learn as much as possible about your disease through independent reading, searching these message boards and above all ASK QUESTIONS from your healthcare team an from other members of this website.
Warmest Regards
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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05-03-2010, 12:16 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Always Herceptin for Her2+
Thank you Joe for your post, as my first oncologist told me just what you quoted. Then a second opinion led me to a forward thinker in Seattle where I was able to get Herceptin "off-label" because it was not yet approved for early stage BC. Yet, I had to do chemo first (AC). Then along came Jean...who got herceptin a year later...with no chemo...also early stage...and now, 5 years later, I am in amazingly good health doing amazing things with my life!!! Thanks to this website and the wonderful folks here. XO Suzan
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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05-03-2010, 03:23 PM
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#6
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Member
Join Date: May 2010
Posts: 13
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Re: Always Herceptin for Her2+
Thanks Susan and Joe. I'm happy things are going your way Susan. I'm still not sure if Herceptin is in my future, but I am feeling very positive about my outlook. You are all an inspiration!
Best,
Nance
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05-04-2010, 07:40 AM
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#7
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Always Herceptin for Her2+
Hi Nance,
I am truly sorry that you have been dx and understand your fear and worry. It is the last thing a woman wants to hear. But as Joe stated we have come a long way.
Suzan and I are very lucky that we pushed the rules.
When we were dx. at early stage (like you) herceptin was only approved for stage 4 patients. Sounds so strange to hear that now. Well even back 5 yrs. ago I thought it was strange. I did have chemo along with my herceptin as Dr. Slamon advised (herceptin works best
with chemo) according to him. So I followed his wise advise.
What to expect...well herceptin treatment is not hard to take. I don't know what chemo treatment you will be given (most often these days with stage 1) TC is used.
Discuss this with your onc. The most common side effect is flu like symptoms a day or two after your treatment.
Muscle aches etc. Take it one step at a time - knowledge is power. Do not be afraid to ask questions, even the same ones over and over until you feel confident that you fully understand.
Please know this dx. is not instant doom....I am now 5 yrs. out like Susan and we are living great active lives
and you will also.
Hugs,
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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05-04-2010, 07:43 AM
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#8
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Always Herceptin for Her2+
kklousiana,
Best wishes for your surgery on May 10th.
Please keep us posted....you are among many great friends who are always here to help. Many women
on the board have had your surgery and can answer all of your questions.
Kind Regards,
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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05-08-2010, 04:45 AM
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#9
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Senior Member
Join Date: May 2010
Posts: 432
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Re: Always Herceptin for Her2+
My wife is having Herceptin along with Chemo.During the last session the Onc mentioned that after a course of 9 doses of Herceptin she will have to switch over to a "Tablet" not easily available here in India.I wonder what it is/The GSK product is available on prescriptionThanks for Joe's post
PBK
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05-08-2010, 02:07 PM
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#10
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Member
Join Date: May 2010
Posts: 13
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Re: Always Herceptin for Her2+
Dear kklouisiana,
I just wanted to tell you I am thinking about you and saying a prayer that your surgery goes well on Monday. May your Mother's Day be happy.
Nance
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05-08-2010, 04:51 PM
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#11
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Always Herceptin for Her2+
I'm very thankful I had a year of herceptin which was only approved here for early stage the month I was diagnosed.
I'm hopefully celebrating five years out next month so like to think herceptin really has changed the prognosis for her2+ patients
My best wishes to your Mom. xx
__________________
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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05-08-2010, 08:04 PM
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#12
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Member
Join Date: May 2010
Posts: 13
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Re: Always Herceptin for Her2+
Hi Tricia,
So glad you have a wonderful anniversary coming up. Your stories are my inspiration and what keeps me smiling. My husband is in complete awe of the difference between five years ago and now. We are incredibly lucky to have entered this journey at this time.
I have to tell you that visiting Ireland has been a long time dream of mine. In fact, my husband had a dream that I got a clean bill of health and we went to Ireland! He is not the traveler I am, so maybe this is the way I will get him there
Thank you for your post. Surgery in 13 days.
Take Care,
Nance |
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05-08-2010, 08:44 PM
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#13
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Always Herceptin for Her2+
Hi pibikay,
It sounds like your wife's oncologist may be thinking about Tykerb, which is a pill for her2 breast cancer. It is usually given with a chemo pill called Xeloda or with I. V. Herceptin. Occassionally it is given with another type of I. V. type of chemo or some other drug. |
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05-09-2010, 12:46 AM
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#14
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Senior Member
Join Date: May 2010
Posts: 432
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Re: Always Herceptin for Her2+
Tykerb is available here on prescrption.It is manufactured by GSK.That is why I am wodering what it may be
Thanks all
PBK
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05-09-2010, 08:59 PM
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#15
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Always Herceptin for Her2+
Maybe it is an aromatase inhibitor like Femara or Arimidex if your wife is estrogen positive. Those come in pill form.
All the best to you and your wife.
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05-09-2010, 09:20 PM
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#16
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Senior Member
Join Date: May 2010
Posts: 432
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Re: Always Herceptin for Her2+
My wife is ER -ve & PR-ve.The Onc who is treating my wife qualified in the US.He is AB, FACP. So we are thinking it may be somehing new in the US.
Thanks
PBK
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