HonCode

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

Reply
 
Thread Tools Display Modes
Old 04-29-2007, 09:50 PM   #1
Barb
Member
 
Join Date: Nov 2005
Location: Australia
Posts: 19
Stopping Herceptin

Jan 2001. Bilateral mastectomy (BC in both breasts); 11/18 Ax Lymph RHS + 8 Ax Lymph LHS; portacath in situ. Chemo + Rad then Arimidex on completion. In remission until:
Aug 2003. Mets to bone in spine and pelvic, HER2+. Taxotere, Zometa, Herceptin treatment. Now stabilized.
I've been on Herceptin over 3 years now and because my scans and tumour markers have been stabilized for 2years, I'm being asked if I had considered coming off it - possibly to 'wait and see'! Presently my family is saying no but after further scans that still say that all is stable, I am now considering my oncologist's suggestion.
Is there anyone else in a similar situation? As yet in Australia, I don't know of anyone or anywhere else for that matter!
We visited UK in 2004 and I took my Herceptin with me. I was asked how long did I think I needed to continue with Herceptin, perhaps they thought I might know something they didn't!
I know if I did agree, I would like to be monitored very closely, but I would value others' opinions.
Barb
Barb is offline   Reply With Quote
Old 04-19-2008, 11:24 PM   #2
romo9
Member
 
Join Date: Jun 2006
Posts: 23
Dear Barb do you think you should post your question in the her2 group forum for a reply? Personally I would not come off if I was coping with the treatment! Greetings from Melbourne! Romo
romo9 is offline   Reply With Quote
Old 04-20-2008, 06:16 PM   #3
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Hi,

I was forced to stop Herceptin because of lowered MUGA score. Several of the members on the board continue with Herceptin for 'maintenance'. I would think if your heart function is fine, you shouldn't take any chances. Continue the treatment is what I would do. I am going to repost your question and maybe more people will answer your question.
__________________
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
Jackie07 is offline   Reply With Quote
Old 04-28-2008, 04:54 PM   #4
Alaina
Member
 
Join Date: Jan 2008
Posts: 7
I too would stay on it! I know of far too many women that were stage IV and after they went off Tamoxifin, the cancer started growing again. I dont know if that would happen with herceptin or not, but why take the chance if you are feeling good.
Alaina is offline   Reply With Quote
Old 06-18-2008, 08:36 AM   #5
Gina
Senior Member
 
Join Date: Oct 2005
Location: Alexandria, VA
Posts: 197
Highly recommend STAYING ON HERCEPTIN

Hi,

I would guess that the regular herceptin is what is keeping you stable. I have been on herceptin since 1999 and uh...I am STILL kickin'. I have had no chemo since 1998--only herceptin and daily regimen, still all these years later and I work and raise my son, so I would NOT even contemplate going off of it--especially in your position...

My 2 cents,
Gina
Gpopp@comcast.net
Gina is offline   Reply With Quote
Old 06-19-2008, 07:01 AM   #6
TSund
Senior Member
 
TSund's Avatar
 
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
Gina!

Gina!!

I'm so glad to see you! It's been a long time.

Question: Have you stayed on the 3 week dose throughout, or do you change dosage according to markers?

And...what is your "daily regime"?

You are an inspiration...

Terri
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
TSund is offline   Reply With Quote
Old 10-27-2008, 03:35 PM   #7
Leah
Junior Member
 
Join Date: Oct 2005
Posts: 3
I was off it for several years with pretty quiet mets. Then I got more, went back on it, and was dx with brain mets WHILE ON IT. So I don't think it's all it's cracked up to be but MD has me on it now still.
Leah 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 07:45 AM.


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