HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 01-16-2015, 01:29 PM   #1
Dakini52
Senior Member
 
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
NED for 5 years!

Just received the results of my 6 month scans and am still NED and marking my 5 year anniversary. So relieved and excited that I have made it this far without another recurrence. I do still receive Herceptin every 3 weeks and am grateful that it is continuing to work for me. Hoping to stick around until they come up with a cure for this :-)
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
Dakini52 is offline   Reply With Quote
Old 01-16-2015, 02:06 PM   #2
tricia keegan
Senior Member
 
tricia keegan's Avatar
 
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: NED for 5 years!

Thats wonderful news Debbie and just what we like to hear, thanks for sharing and many congrats!!!
__________________
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!
tricia keegan is offline   Reply With Quote
Old 01-16-2015, 02:10 PM   #3
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Wink Re: NED for 5 years!

Great news!
Thanks for sharing your success story.
Does this mean that getting Perjeta at this time is unlikely?

Handshake over the ridge from my home to yours.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
StephN is offline   Reply With Quote
Old 01-16-2015, 05:51 PM   #4
Dakini52
Senior Member
 
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
Re: NED for 5 years!

Thanks Steph. You are such an inspiration to me. Perjeta is still on the table but considering whether or not it should be introduced at this time. I'm kind of thinking "if it ain't broke don't fix it" :-)
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
Dakini52 is offline   Reply With Quote
Old 01-16-2015, 06:36 PM   #5
KathyT
Senior Member
 
Join Date: Mar 2014
Location: Glendale, AZ
Posts: 210
Re: NED for 5 years!

Congratulations!!
__________________
Kathy
38 years old!

January 17th 2014-mammo, ultrasound, biopsy
January 20th 2014- diagnosed, ER/PR+, Her2+++, Stage 2A
January 21st 2014-MRI, right breast only plus lymph nodes
January 23rd 2014- Pet scan-2 cm tumor, 3 lymph nodes
February 4th 2014-port insertion
February 12th 2014-first chemo treatment(TCHP x6 cycles)
May 28th 2014-LAST chemo treatment!!
July 10th 2014-double mastectomy
July 29th 2014-start radiation(30)
Sept. 11th 2014last radiation treatment!!!
November 12 2014-started Tamoxifen
January 20 2015-reconstruction begins, lat flap
February 4 2015-last Herceptin treatment!!
April 24, 2015- pet scan-NED!!
June 3 2015- exchange surgery, port removed!!
September 8 2015-hysterectomy/oophorectomy
September 15 2015-Revision of lat flap reconstruction
December 23 2015-nipple reconstruction
May 9th 2016-Mets to pituitary gland, liver and C7 vertebrae
May 10th-port put back in:(
May 17th- biopsy of mass on back
May 19th-started Herceptin/Perjeta
May 20th-5 treatments Cyberknife to pituitary gland tumor
June 9th-Started THP (will have 6 cycles)
August 17th-MRI of brain, significant reduction in tumor
😃, repeat MRI in 3 months. Received first Zometa
infusion.
June 24th 2019- Thoracic spine Mets, leptomeningeal Mets , 10 radiation treatments
Aug 1st- Ommaya Reservoir implanted
KathyT is offline   Reply With Quote
Old 01-16-2015, 07:18 PM   #6
LoisLane
Senior Member
 
LoisLane's Avatar
 
Join Date: Mar 2010
Location: Thornhill Ontario Canada
Posts: 266
Re: NED for 5 years!

glad to hear your happy news!
__________________
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara

November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2

January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
LoisLane is offline   Reply With Quote
Old 01-17-2015, 07:58 AM   #7
Lucy
Senior Member
 
Join Date: Oct 2014
Posts: 293
Re: NED for 5 years!

That's great!

What stage were you when diagnosed? Just curious.
Lucy is offline   Reply With Quote
Old 01-17-2015, 09:14 AM   #8
Dakini52
Senior Member
 
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
Re: NED for 5 years!

I was stage IIB
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
Dakini52 is offline   Reply With Quote
Old 01-17-2015, 10:49 AM   #9
Carol Ann
Senior Member
 
Join Date: Dec 2013
Posts: 1,045
Re: NED for 5 years!

Great news, congratulations!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
Carol Ann is offline   Reply With Quote
Old 01-18-2015, 07:36 AM   #10
linzer
Senior Member
 
Join Date: Jun 2014
Posts: 113
Re: NED for 5 years!

That's awesome news! I'm still in treatment (Herceptin only at this point) until summer, but cannot wait until I can start to count the days once I'm off treatment! Yay you!!
Linda
__________________
---------------
5/15/14 Dx IDC, right breast, 2 cm with 3 cm lymph node ER/PR- Her2+

6/11/14 Taxol / Herceptin / Perjeta

9/17/14 Lumpectomy, axillary lymph node dissection 3/9 nodes showed previous involvement but all clear due to THP!!

9/24/14 NED

10/8/14 AC x 4

12/16/14 rads x 20 WBRT only
linzer is offline   Reply With Quote
Old 01-18-2015, 04:36 PM   #11
thinkpositive
Senior Member
 
Join Date: May 2014
Location: San Diego
Posts: 411
Re: NED for 5 years!

I'm so happy for you! I can only imagine how it must feel to have reached this milestone. I'm certainly going to celebrate when I hit this milestone and I hope that you are doing the same!

Take care
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
thinkpositive is offline   Reply With Quote
Old 01-18-2015, 05:30 PM   #12
leldredge1
Senior Member
 
leldredge1's Avatar
 
Join Date: Mar 2014
Posts: 44
Re: NED for 5 years!

Congratulations!!
__________________
Laurie in Idaho
IDC, Her2+++, PR- ER- diagnosed Feb 2014 1 month before 53rd bday
2.6 cm mass right breast with lymph node involvement
THP-FEC neoadjuvant chemo regimen

THP (taxotere, Herceptin, perjcta) every 3 weeks for 4 doses started 3/27/14
BRCA negative
bilateral mastectomy with lymph node dissection done June 2014 15 lymph nodes removed all negative for cancer, breast tumor gone
FEC (5-FU, epriubicin, Cytoxan) every 3 weeks for 4 doses, Herceptin every 3 weeks for a year, then
radiation for 6 weeks
New Years Eve 2014 completed radiation
September 2015 Latissimus Dorsi Flap reconstruction
March 2016 rib fractures under implant
leldredge1 is offline   Reply With Quote
Old 01-18-2015, 06:00 PM   #13
Laurel
Senior Member
 
Laurel's Avatar
 
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
Re: NED for 5 years!

Yes! Now for another 5!
__________________

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....

Laurel is offline   Reply With Quote
Old 01-18-2015, 07:20 PM   #14
Dakini52
Senior Member
 
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
Re: NED for 5 years!

Hey Carol Ann, how are you doing with the shingles? Hope that is over and you are feeling better now.
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
Dakini52 is offline   Reply With Quote
Old 01-18-2015, 10:30 PM   #15
Pray
Senior Member
 
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
Re: NED for 5 years!

How wonderful for you! God's blessings to you and your family
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
Pray is offline   Reply With Quote
Old 01-19-2015, 06:41 PM   #16
suzan w
Senior Member
 
suzan w's Avatar
 
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
Re: NED for 5 years!

That is fantastic! 5 years is HUGE!!
__________________
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!!
suzan w is offline   Reply With Quote
Old 01-21-2015, 09:22 AM   #17
lkc Gumby
Senior Member
 
lkc Gumby's Avatar
 
Join Date: Feb 2006
Posts: 437
Re: NED for 5 years!

Congrats Debbie. 5 years is a biggie!
__________________
Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
lkc Gumby is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 04:46 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter