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Old 12-04-2019, 03:34 PM   #1
DianaMK
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Join Date: Mar 2011
Posts: 70
Re: After 9 years on Herceptin,heart ef crash

Thanks for all your responses. I have been on coreg for about 7 years after having a drop in EF way back then. Stable EF for 7 years until now.
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12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
Radiation
Herceptin - one year
6/2010 - Stage 4 - lung and skin mets
Lung resection
TCH x 6
12/2010 - right mastectomy
On Herceptin
Scans every six months
11/2013 - stable continue to watch spot on lung
Continue on Herceptin
6/2016 - 6 years Stage 4 - stable - continue Herceptin
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Old 12-04-2019, 10:57 PM   #2
donocco
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Join Date: Oct 2013
Posts: 474
Re: After 9 years on Herceptin,heart ef crash

Diana

I still wonder what would happen if you were put on an ACE inhibitor along with the coreg , temporarily stopped the Herceptin, waited until the LVEF function increased, then went back on the herceptin while taking the Coreg and Ace inhibitor together. If I had her 2 Neu positive breast cancer (rare in men but far from impossible) and my LVEF started to drop that is what I would do. If I have to stop taking the herceptin I have to but, to me, thats the last step.

The suggestion to take Coenzyme Q10 was a good one. I had no idea it was used to increased LVEF in situatons like yours. I take Q 10 to lower my blood pressure and it works well, actually I take 900mg a day in 3 divided doses, 400mg in the morning, 400mg in the evening, and 100mg at bedtime.

It may well have anti-cancer action. There was an article i read where patients with the lowest blood concentration of Coenzyme Q-10 had the more
extensive and aggressive melanomas than those in the highest Quartile.

There was a Danish experiment in 1993 where a few patients with stage 4 breast cancer took about 400mg Coenzyme Q 10 daily and the mets disappeared. Im sure you could find this article. It might be wise to take Q10
for its possible anticancer action, particularly if they do stop herceptin. At least you will be taking something.

Paul
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Old 01-08-2020, 11:30 PM   #3
KaiM
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Posts: 59
Re: After 9 years on Herceptin,heart ef crash

Diana, I have been on Herceptin since 2011 and did experience a significant drop in my EF about two years ago. The cardiologist put me on Cardivolol and Lisinopril and I took a six week break on Herceptin (2 doses). They did another ECHO and my EF had recovered enough to restart the Herceptin while continue with the Cardivolol and Lisinopril. I took the heart meds for a year and my EF continued to improve until it finally stabilized back in the normal range (above 50). I actually stopped the heart meds now and my EF has remained stable, so it seems a temporary drop can happen and giving your heart a break from Herceptin for a month or so and/or adding in Cardivolol and Lisinopril might just work for you as it did for me. Wishing you all the best with this, it can be a scary proposition to stop Herceptin after such a long stretch. I would definitely seek out heart meds and request frequent ECHOs to monitor a possible rebound of your EF that would enable you to restart the Herceptin. Keep us updated.
__________________
9/11 - dx 3 mnths after giving birth to my 2nd child. (not a clogged milk duct) ER/PR- HER2+++
10/11 - Initially staged at 2b after unilateral mastectomy
11/11 - CT scan 4 weeks later found spots on bones and liver (crap!) Stage 4
12/11 - starting TCH
5/12 - STABLE. stoping TCH after 6 months and continuing Herceptin with Tykerb and Xgeva
8/12 - STABLE, but I'm calling it NED because all they see is bone scaring!
11/12 - STABLE
2/13 - STABLE
6/13 - STABLE
9/13 - STABLE
12/13 - STABLE
3/14 - STABLE
6/14 - STABLE
9/14 - STABLE
12/14 - STABLE
...Continue Herceptin and daily Tykerb and scans every 4 months
1/16 - STABLE
11/18 - Five level spinal fusion from collapsing vertebrae due to spinal Mets/radiation
12/19 - STABLE
Mom to Audrey (12 yrs) and Hudson (8)

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Old 01-09-2020, 11:40 AM   #4
supportwife
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Join Date: Oct 2014
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Re: After 9 years on Herceptin,heart ef crash

My wife experienced the same thing, however the doctor prescribed an ace inhibitor carvedilol and she was back on herceptin. Hope it helps.
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Old 04-17-2020, 05:30 AM
colinmunro
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