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Old 12-02-2019, 05:51 PM   #1
DianaMK
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Join Date: Mar 2011
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After 9 years on Herceptin,heart ef crash

I'm so nervous, been on herceptin 9 years which has kept me a stage 4 stable. My last echo went from 55 EF to 47. As a result, my doctors want me to stop treatment after 9 years. Has anyone else experienced this? Thank you for your input.
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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 12-03-2019, 01:14 PM   #2
Pamelamary
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Re: After 9 years on Herceptin,heart ef crash

Diana, this is always a concern for long term users of Herceptin. My Echo has been slowly sliding downwards. Have you discussed what you could do to improve your heart function? I remember quite a lot on this topic on this forum.
While the idea of stopping Herceptin is scary, there are a number of women who have done just that and continued NEAD. Perhaps put a call out?
Best wishes.... Pam
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Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 12-03-2019, 01:38 PM   #3
donocco
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Re: After 9 years on Herceptin,heart ef crash

Diana

I did some very quick research on the subject. If you put "Cardiac side effects of herceptin" in google there is an article (a long one) from the nci that discusses this. They have a lot of charts in the article but one chart shows women whose LVEF was decreased, and the higher and lower LVEF values were shown. In most patients with your values the herceptin was continued as long as the patient was asymptomatic as far as the heart decreased function goes.

If you put Treating herceptin cardiac side effects in google, there is an article on the first page "Popular heart medications can prevent herceptin induced etc etc. They mention Cardivilol (brand name Coreg) combined with Lisinopril (brand name Zestril) to be used with herceptin. Perhaps you could be put on these drugs to prevent further damage. it seems your problem is not that severe yet. Some of the patients listed had LVEFs that went from the 50s to the 30s and these patients were taken off the drug. In your case no.
Cardivolol is a combination beta and alpha blocker and Lisinpril is an Ace inhibitor. Both are old established drugs. I used to fill prescriptions for these drugs often (particularly Lisinopril=Zestril.

Sometimes stopping the herceptin for a short time (perhaps also using these medications) allows the heart to recover and the herceptin is restarted.
Talk with the doctors. perhaps a second opinion. From what little I know about this it doesnt seem your situation is that bad. Another article I read seemed to indicate that unless the LVEF dropped by 10 points the Herceptin was continued. Ill do some research on this important subject. It just seems to me the docs are jumping too fast. I really dont know. I would menton the Cardivolol and Lisinopril use.

Paul
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Old 12-03-2019, 03:05 PM   #4
Laurel
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Re: After 9 years on Herceptin,heart ef crash

Diana,

Many of the women here have used CoQ10 for improving their EFs. Worth a try!

Laurel
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

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Old 12-04-2019, 03:34 PM   #5
DianaMK
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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.
__________________
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   #6
donocco
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Posts: 407
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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