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Old 02-05-2008, 08:35 AM   #1
Paris
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Join Date: Jan 2007
Posts: 73
Herceptin Holiday...Anyone take one?

Hi- I posted not long ago that I had an abnormal stress echo which was followed up by a cardiac cath. Unfortunately, the results were somewhat inconclusive. My heart makes alot of pvc's (premature ventricular contractions), and there is a slight decrease in cardiac function plus I have a high cardiac output which didn't make sense because all the bloodwork I had came back normal. I am on Toprol XL (beta-blocker) and am OFF herceptin. My onc. doesn't want to risk it right now because although my LVEF on the last echo was 53% it was 67% a month prior. I switched cardiologists as I was not getting the answers I was looking for and like the new one. I'm unsure whether I should go get a second opinion at a major cardiac hospital. I think the pvc's are getting better at least when I'm not stressing my heart but I have these sensations in my chest like if someone were "pinching" my lower heart which is where the weakness is.

If you were taken off of herceptin due to cardiac issues how long of a break did you take before going back on? The plan right now is to see how my heart is at the end of the month and hopefully be able to resume herceptin. It would then be a five week break. I didn't ask how long a break I could take before it would be too late to go back on.

If you were not able to complete your year of herceptin how did/do you feel about it? I know there is much research going on about the length of treatment but until the definitive results are out, I'd like to stick with the one year. On the other hand, if I done for good at least I won't have had the emotional buildup to the last herceptin round.

Thanks for reading this ladies! I'm looking forward to your responses.

Jamie
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Diagnosed 11/06 IDC left breast Stage 1, High Grade w/extensive High Grade DCIS. Right breast extensive hyperplasia w/calcifications.
ER-/PR- HER2+++
Bi-lateral masectomy 12/15/06 w/expanders
SNB Node Negative
Chemo Taxotere, Cytoxan 2/07-4/07
Herceptin Started 5/07
Exchange surgery 6/15/07
Herceptin stopped after 12 rounds due to herceptin induced cardiomyopathy
On heart meds 'til?
Age 40 at diagnosis
Cancer may have been a defining moment but it does not define me!
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Old 02-05-2008, 12:54 PM   #2
StephN
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Location: Misty woods of WA State
Posts: 4,128
Hi Paris -
Looks like from your sig that you got about 1/2 a year of Herceptin. I am stage IV so am on it permanently or until it fails me.

I did take a 3 month Herceptin Holiday beginning of 2007, just because I wanted it. I understand there is a long half life and it takes a couple of months to clear our system. I think you are still getting some benefit.

You can search this site and find a number of women have had to either take a break or stop their Herceptin due to heart problems. Often times the heart will repair itself with either time or time and some special meds. Then the patient was able to resume.

You can always get a new loading dose any time your docs say it is OK to go back on Herceptin. I don't think it is ever too late.
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"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.
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Old 02-05-2008, 01:44 PM   #3
momdeeco
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Location: Bartonville, IL
Posts: 70
I had to go off Herceptin due to abnormal Muga. I received 9 doses (I think) At first I was pretty upset, but was thankful that I was able to tolerate that many. It was the opinion of 2 oncologist that due to the Muga I stop the herceptin and not receive anymore. I have since have requested Echo's instead of Muga's.
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Karla
8/05 NORMAL MAMMO
11/05 DX AFTER FINDING LUMP AGE 47
STAGE 1 HIGH RISK
1.1 CM/NODE NEG
ER-/PR- HER 2 +++ GRADE 3
12/05 PARTIAL MASTECTOMY
1/06 CHEMO AC DD X 6
5/06 RADS X 30
10/06 STARTED HERCEPTIN AFTER 3RD OPINION
3/07 GENETIC TESTING-GENE VARIANT FOR BRCA 1 AND 2
3/07 STOPPED HERCPTIN DUE TO LOW EF
BSO 8/08 (P53 SIGNATURE--PRECANCEROUS CELLS)
11/08---IN A STUDY/MRI EVERY 6 MONTHS/MAMMO EVERY YEAR
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Old 02-05-2008, 01:57 PM   #4
Jyber
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Join Date: Oct 2007
Location: PA
Posts: 27
I had to stop herceptin because of a drop in my LVEF of over 10%. It was still in the 50s but had gone down from 65 and was not going back up despite the herceptin pause. My oncologist said the max pause is three months and if the hereptin can't be started again at that point, it is stopped permanently. (f course, if a patient is stage 4 that could be different.)

I ended up with about four months of herceptin and can only hope it was enough.

At first I was bummed to stop the herceptin but now have accepted it. My oncologist says I may have been cured of my breast cancer but I was definitely suffering heart damage from the herceptin. She said she did not want to be responsible for my developing a heart condition.
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diagnosed 1/07;
ER+, PR+, HER-2 +;
4.2 cm. invasive ductal carcinoma;
mastectomy 2/07;
SNB negative :-) ;
chemo (AC, followed by Taxol); herceptin scheduled until 6/08 but stopped 11/07 due to LVEF drop)
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Old 02-07-2008, 11:08 PM   #5
pffida
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Location: Southern California
Posts: 33
Stopping Herceptin

I, too, experienced cardiac problems (reduced ejection fraction). I had an echocardiogram, nuclear stress test, exercise stress test and a halter monitor for a day to monitor racing pulse. After all the tests, it was determined that the Herceptin, taken every three weeks, was causing the problem. I took a rest for about 5-6 weeks. My horrible cough disappeared, as did the fast pulse.

I then started Herceptin again, only this time I'm taking it every week. The onc has had good success is making this change for her patients. I've been back on the drug since last October and have no symptoms of cardiac problems. You might want to ask about receiving it every week -- its a chore, but worth it.
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Diagnosed 11/06; IDC
Stage 1, Grade 2
MRM 12/06; 19 nodes removed, all negative
ER/PR-, HER2+++
  • 4 rounds AC - every 3 weeks
  • 3 rounds Taxol + Herceptin - every 3 weeks (developed allergy to Taxol so stopped treatment)
  • Weekly Herceptin after Herceptin-induced cardiomyopathy from treatments every 3 weeks
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