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Old 03-03-2006, 01:22 PM   #1
Maryanne
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Finishing up my one year of Herceptin

I will be finishing up my one year of adjuvant Herceptin very soon , and was wondering if there were any withdrawal symptoms other than psychological that I should be aware of???

Since I am ER/PR neg I feel like I will be walking that tightrope with out a net!
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Old 03-03-2006, 03:18 PM   #2
Diane H
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I also will be finishing up in a few months and this is a very interesting question. On one hand it will be wonderful not to get stuck every three weeks but nerve wracking to be out there as you say without a net!
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Old 03-03-2006, 03:26 PM   #3
Diane Nathan
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MaryAnne,
I too am ER- Pr- and had the exact same feelings you are facing now. When I finished my year of Herceptin I cryed. I removed my port the following month and tried to put it past me. At my 2 year anniversary I decided to have a full PET/CT scan just to make sure. Thankfully, all is well so far. I probably will do this every year for peace of mind. It does get easier as time goes on - I am 2 1/2 years now, but, like you, our life line was cut when the Herceptin stopped.
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Old 03-03-2006, 09:04 PM   #4
Audrey
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Maryanne and Diane, I remember feeling that way, too, when my year of herceptin was up. I was so used to going to the clinic every week--for 52 weeks, it was hard to just "quit cold turkey" like that...My last Herceptin was in March 2003, so it's been 3 years already and I'm doing great--(diagnosed in 2001, Stage III, large tumor, 11+ nodes, er/pr-...) although it was scary going off of it at first, it gets easier and easier as time goes on. Remember, herceptin and other treatments will still be there if you should ever need them again in the future...Just wanted you to know you are certainly not alone in your feelings and it does take some time to adjust to life after treatment is over--you know your onc. and nursing staff are just a phone call away if you have any questions, and of course, this website is always a great place to go and share your concerns, fears, etc. I think there are also a few great books out there about this exact subject--coping with life after breast cancer treatment--you can probably find them at your local library and see if they're helpful to you...Congrats on nearing the end of your treatment!
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Old 03-04-2006, 06:18 AM   #5
DianaK
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I,too,am finishing my year of herceptin shortly-but I am er/pr+.This past year I could hardly wait for this day to come,but now I am starting to freak out-go figure!I know that Femara and my Lupron shots are nothing to sneeze at but I have FELT the herceptin working on my neck lymph nodes and I pray they don't act up again-scans didn't show any cancer activity,but why did the sensations go away on the herceptin?

Sorry,didn't answer your original question-but I am curious too!
Diana
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Old 03-04-2006, 06:20 AM   #6
Oliviab
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Stopping Herceptin

Hi Maryanne,

I have heard - and may be wrong? that Herceptin stays in your system for 6 months after treatment? That helps me think about going off it.

I thought I read that on this site.

Olivia
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Old 03-06-2006, 07:30 AM   #7
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I agree with the post above that the wash out for Herceptin is 6 months. I read this recently in the Physician's Desk Manual of Prescriptions. So you are covered for quite some time. Besides your will enjoy the break from treatment so relax,
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Old 03-06-2006, 04:38 PM   #8
Maryanne
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Today was my last day of herceptin and I asked the research nurse .....I am in a trial at Sloane Kettering ........How long the Heceptin would stay in my system and she told me only 2 weeks!!!! I was also under the impression it was 6 months.
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Old 03-06-2006, 05:41 PM   #9
Becky
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Maryanne


Herceptin has a half life of 20.8 days. This means that half of it is still in your body when its time for the next infusion. This is why you get the large loading dose, so that there is plenty around. So... in another 20.8 days, another half of it is gone and you are down to 25% etc, etc. So, it will take awhile for all of it to be completely gone. I don't have a calculator on me but...

I will say that all of it is not around in 6 months but after 3 months 1/8 is around and in 4 months about 1/18 is around (of the amount of the last dose you got). I think in about 6 months, about 1/70 is still there.

Love, Becky
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Old 03-06-2006, 09:43 PM   #10
michele u
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Smile

Maryanne,

all of us taking the one year herceptin were in your shoes. It is hard to stop. The great thing is last week i asked my onc how many of the gals that got the herceptin arm in his practice have recurred. He said NONE!!!!!!!!!!!!!!!!!!!!!!!!
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Old 06-02-2011, 06:58 PM   #11
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Re: Finishing up my one year of Herceptin

did you ask you onc how many had to give up therapy due to heart tox and worse
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Old 06-03-2011, 05:11 PM   #12
Patb
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Re: Finishing up my one year of Herceptin

This is 2006
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patb

Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 06-05-2011, 04:31 PM   #13
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Re: Finishing up my one year of Herceptin

Oddly enough, I was not worried about stopping herceptin. I did all I could and felt like I was safe. I stopped December 2nd, had an abdominal CT December 10 that was clean.

May 16 I had an abdominal CT that showed liver lesions.

So, it's good you are worried, maybe that will protect you!

I hadn't realized that herceptin had caused me some aches and pains. They went away almost immediately, and I felt a lot better when I stopped, for a short time anyway. there were no withdrawals. Not even the mental ones for me, but I am rare that way.

Good luck and PLEASE don't let my story scare you; like Michele said, most people don't recur. I knew my cancer was very aggressive - I had a perfect breast in April and in May it was misshapen and dimpled. It was sonogrammed at 2.0 cm and by the time I had it out, it was almost 4 cm. and other areas popped up like mushrooms.

Liver lesions seem to be following the same, swift path. While they haven't been biopsied yet (that happens next week) there is little doubt that it's cancer.

I cannot wait to get back on something!
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 06-06-2011, 03:57 PM   #14
rinaina
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Re: Finishing up my one year of Herceptin

The farther out you get from the treatments, the easier it will get. It was like being without the security blanket you had for a year.
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Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 08-16-2011, 03:47 PM   #15
ginnyg898
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Re: Finishing up my one year of Herceptin

My last Herceptin treatment is in 3 weeks. I was just discussing this issue with the nurse at the chemo-spa today. I told her it is going to be so strange not coming in every three weeks and very scary to be losing my security blanket. However, I am really hoping that the end of Herceptin means the end of joint pain :/
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41 Years Old
Dx w/IDC in August '10
No family history
ER+/PR-/HER2+
2.2cm tumor/Stage 2A
No node involvement
Tested negative for BRCA 1/2
Participated in a UCLA clinical trial testing TCH and/or Lapatinib in stage 1/2/3 bc patients that can be removed by surgery.
Underwent neo-adjuvant therapy to shrink tumor prior to surgery.
1st Surgery date: 2/16/11
Pathology report indicated ADH/DCIS in margin.
2nd Surgery: 3/21/11
Clean margins!
Started radiation: 4/11/11
Completed radiation: 7/8/11
1st post-surgical mammogram: 8/16/11 - CLEAR!
6 Weeks of Tamoxifen - Failure to Respond
Started Lupron/Arimidex: 8/29/11
Herceptin until September '11

Recurrence - August 2018
Same profile - ER+/PR-/HER2+
Undergoing neo-adjuvant therapy prior to surgery;
Gemzar, Carboplatin, Herceptin & Perjeta
Chemo through the end of 2018...
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Old 08-17-2011, 09:43 AM   #16
suzan w
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Re: Finishing up my one year of Herceptin

When I was done with my year of Herceptin it was a bit lilke going without a parachute! In time I felt more and more at ease, and now I am just grateful for the opportunity to have received this amazing (at the time) drug. I got it "off lable" because in 2005 it had not yet been approved for stage 1 breast cancers. My side effects were my crusty nose was gone, no more bloody noses!! The psychological ones faded with time!
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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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Old 08-17-2011, 01:59 PM   #17
Mary L
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Re: Finishing up my one year of Herceptin

I was diag. with IBC stage IIIb in 2003. I was on Herceptin for over 4 years only taking breaks when it affected my heart. I had my last Herceptin 4 years ago this coming Oct 2011. I was very worried about it coming back and like the others said, it is your security blanket. I will be an 8 year survivor this Oct and I am so thankful Herceptin was there for me. It saved my life. I had a few side effects but they are either gone or not a problem for me. I wish you the best. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 08-18-2011, 12:22 PM   #18
snolan
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Re: Finishing up my one year of Herceptin

My last herceptin treatment is next Friday. I too have the same feeling, great that I don't have to come in and get stuck every three weeks, but scared about not having the herceptin blanket. Having seen other post on this I know it is a common feeling that we all have and will work its way through like everything else. But hearing that others feel the same way keeps me from feeling like I'm alone.

Counting the days
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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