 |
|
05-26-2010, 06:41 AM
|
#41
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Five years out???
Thanks for all your input ladies, and it's refreshing and encouraging to see so many posting NED still 
Welcome Candlegranny, I'm glad you found us and hope so many survivor's here give you hope
__________________
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!
|
|
|
|
05-26-2010, 07:34 AM
|
#42
|
|
Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
|
Re: Five years out???
Hi Tricia ~
I was diagnosed stage 3 almost 7 years ago next week....so hopefully this will give some hope out there.
Hugs ~ Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
|
|
|
|
|
05-26-2010, 08:52 AM
|
#43
|
|
Senior Member
Join Date: Feb 2010
Posts: 151
|
Re: Five years out???
Sherri you sound alot like me. stage 3c but i dont know what IBC is. still learning. what an inspiration. seems like everyone i talked to was stage 1 lumpectomy and percentages like 96% it would not return but they were not HER2. I am so excited that i found this site. I need to work on my stats at the end of my emails. got to learn exactly what it all means and what i have so i can get it right. I try to be positive but until i found this site i thought Her2 always comes back, so in the back of my mind it was hard for me to plan the future. NOt any more. I cannot exlain the hope I have since this site.
|
|
|
|
|
05-26-2010, 02:05 PM
|
#44
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Five years out???
Candlegranny, glad it's helped to read of other's beating this for longer than the Dr's thought initially
Btw, IBC stands for inflammatry breast cancer which is very aggressive so Sherri is really beating all the odds! While it's still too early for anyone to say if herceptin has made a long term difference to us, it has certainly helped many of us so far gain more years and recurr less often I think. This is why I began this thread, coming up to five years myself I wondered how many other's out there are doing well, without a recurrance and while this thread is in no way a scientific result I think it's still very encouraging. I also have a friend who is a twenty three year survivor, she had an aggressive large tumour and twenty two positive nodes and that was all those years ago. They did'nt test for her2 then so she thinks she was triple negative but does'nt know for sure.
Thanks again everyone, I'll do a summary on numbers tomorrow.
__________________
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; 05-26-2010 at 02:08 PM..
|
|
|
|
|
05-26-2010, 04:21 PM
|
#45
|
|
Senior Member
Join Date: Sep 2006
Location: Nebraska
Posts: 154
|
Re: Five years out???
Tricia, I'm almost 7 years out with 35 pos nodes! you will be there too!!
__________________
Michele Ulmer
Dx.2003 Stage 3b 35 pos nodes
Dx August 2003 Stage 3B with 35/35 nodes IDC age 39
Lumpectomy
A/C x4 Taxol x12
35 radiation tx
1Year Herceptin in trial
HER2 vaccine trial Seattle
3 months Tykerb off label
NED
|
|
|
|
|
05-28-2010, 02:51 PM
|
#46
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Five years out???
Michele, wow!!!! Thats amazing and congrats to you and thanks for posting as so many of us find it encouraging to hear from ladies like you
Ruth, congrats and thank you too!!
__________________
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!
|
|
|
|
|
05-28-2010, 07:12 PM
|
#47
|
|
Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
|
Re: Five years out???
5 years for me too.  I was diagnosed June 24, 2005 - stage 2B - 1 node microscopic invasion.....
No recurrence....thank God everyday for the life I now live!
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
|
|
|
|
|
05-29-2010, 04:46 PM
|
#48
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Five years out???
Delighted to see your post Mary Jo, I also was dx in June '05
__________________
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!
|
|
|
|
|
05-29-2010, 10:32 PM
|
#49
|
|
Senior Member
Join Date: May 2006
Location: California
Posts: 668
|
Re: Five years out???
Ann;
Question...How do you figure you are going to be NED in Sept. 10.?..Are you counting from the time you were diagnosed? back in 1995..so five years out will make you NED?
Just wondering, curious...
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
|
|
|
|
|
05-30-2010, 02:08 PM
|
#50
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Five years out???
Our latest tally as of today
Herceptin - 23
No herceptin- 5
Recurrance's - 0
All good news so far
Adriana, Ann was dx in Sept '05, so I think she means assuming all is well she'll be five years out then. I've included you in the stats Ann
__________________
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; 05-30-2010 at 02:12 PM..
|
|
|
|
|
06-03-2010, 06:10 PM
|
#51
|
|
Senior Member
Join Date: Sep 2005
Posts: 90
|
Re: Five years out???
It's been five years this month for me. I remember how desperate I was to find people who had survived bc. I was so thankful to find Christine! Now there are many of us.
I'm grateful for Herceptin! I only got 6 months of it, due to heart problem, but a study or two, including one on the list for the current ASCO convention, seem to show that even a small amount of Herceptin makes a difference! I'm going to assume I got enough!
My chemo brain injury keeps me from posting much, but I so appreciate all you wonderful people and being able to read your posts and hear your encouragement to others.
Five years, and onward!
- Carol
__________________
Carol
Lyons, CO
dx June '05 at age 55
Stage 1, 1.5cm
ER+++, PR--, HER2+++
Lumpectomy, A/C, T/H
Herceptin stopped due to low LVEF (35%)
2010: NED, but continuing major chemo brain injury
www.BeyondChemoBrain.com
|
|
|
|
|
06-03-2010, 07:42 PM
|
#52
|
|
Senior Member
Join Date: May 2006
Posts: 143
|
Re: Five years out???
I'm another almost 5 year-er. I'm over 5 from dx, but just under 5 from surgery (I had neo adjuvant chemo.) Stage 3a. er/pr-. Large tumor. NED!
Linda
|
|
|
|
|
06-03-2010, 08:14 PM
|
#53
|
|
Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
|
Re: Five years out???
I keep forgetting when you start counting... diagnosed in 2005. Actually went in for my appointment today all happy thinking I was hitting my 5 year mark. I ended up having a seizure when they were doing my blood draw! 2 of 'em right in a row, now I have to wait to see a neurologist and possibly a brain scan - darn!
__________________
Kim
Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes
BRCA 2 positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara
|
|
|
|
|
06-04-2010, 01:14 PM
|
#54
|
|
Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
|
Re: Five years out???
I was diagnosed October 28, 2005, so I am looking forward to 5 years this October.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
|
|
|
|
|
06-04-2010, 02:06 PM
|
#55
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Five years out???
Congratulations ladies, it's great to see so many hitting the five years and beyond!
Kim, fingers crossed for you and sorry you have this little "bump" to sort out but I'm sure you'll be hitting that five year mark too!!
__________________
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!
|
|
|
|
|
06-04-2010, 09:26 PM
|
#56
|
|
Member
Join Date: Jan 2007
Location: San Clemente, California
Posts: 14
|
Re: Five years out???
So excited to see this poll. I am 5 years cancer-free. Had adjuvant Herceptin and Tykerb. Such miracle drugs! Love my life.
__________________
Diagnosed 4/05
Stage IIIc
Triple positive
Epirubicin/Cytoxcin 6x
Mastectomy and reconstruction (Diep Flap)
Taxotere/Gemzar/Herceptin 6x
Rads 28 with boost
Herceptin 18 months
Tykerb
|
|
|
|
|
06-05-2010, 09:01 AM
|
#57
|
|
Senior Member
Join Date: Sep 2005
Posts: 414
|
Re: Five years out???
Six years and no recurrence. Received herceptin a bit later than normal.
|
|
|
|
|
06-05-2010, 11:32 AM
|
#58
|
|
Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
|
Re: Five years out???
Hi, sorry not to have responded sooner -- I read the initial post and had thought that only those who received trastuzumab were included in the tally. And as a Stage 1 I do find it hard to post about still being "NED" because it is so unfair that so many others never even got the chance to "start" from an early diagnosis. At the same time, I do post about it to encourage people who are just terrified about being diagnosed at all, because maybe if they know that someone diagnosed as "high-risk" stage 1 with high-grade HER2-positive disease, and who has NOT even had all the treatments available now and is still NED, they will feel a little less panicked.
AlaskaAngel
Dx January, 2002, still NED
CAFx6 (4 weeks apart, not 3, due to declining blood boosters)
Radiation
tamoxifen x 1 3/4 years as a strongly ER+, PR+
No taxane
No trastuzumab
No AI
Use of nightly melatonin, freshly ground flaxseed, diet and exercise in hope these things help with prevention of recurrence.
|
|
|
|
|
06-05-2010, 04:59 PM
|
#59
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Five years out???
Thanks everyone and I'll do another tally tomorrow!!
Alaska angel, thanks for posting too. It's obviously not an official poll but thought it would give us all an idea of how we're doing .
Its wonderful to know you're doing so well despite the lack of herceptin and I'm glad to add your stats to the numbers to give us an even outlook!
Many congrats to you on doing so well, and thank you again to all who have posted
__________________
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!
|
|
|
|
|
06-05-2010, 09:31 PM
|
#60
|
|
Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
|
Re: Five years out???
5 1/2 years NED. received 1 yr weekly Herceptin.. began 6 weeks after completing AC/T dose dense (was JUST approved for early stage Her2+)
Last edited by Soccermom; 06-05-2010 at 09:34 PM..
Reason: more info
|
|
|
|
| Thread Tools |
|
|
| Display Modes |
 Linear Mode
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 12:57 AM.
|
