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Old 04-29-2007, 09:50 PM   #1
Barb
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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
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Old 04-19-2008, 11:24 PM   #2
romo9
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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
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Old 04-20-2008, 06:16 PM   #3
Jackie07
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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.
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Old 04-28-2008, 04:54 PM   #4
Alaina
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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.
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Old 06-18-2008, 08:36 AM   #5
Gina
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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
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Old 06-19-2008, 07:01 AM   #6
TSund
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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
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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.
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Old 10-27-2008, 03:35 PM   #7
Leah
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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.
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