Heart Issues with Long Term Herceptin Use
 

I'm interested to know if anyone here has had decreased EF scores after many years on Herceptin - this is a question for the Metastatic amongst us. I would love to hear your stories and outcome.

Back in early Feb my annual heart scan showed an EF that had dropped to 45% (it had been sitting comfortably around 53% for a number of years). I had been on Herceptin continuously for 9 years (with a few bouts of chemo in there). My onc immediately stopped Herceptin, and commenced an ACE inhibitor with the plan that a Beta Blocker would be introduced after one week. I did not tolerate the ACE Inhibitor (I experienced a quite common side effect of a gut-wrenching cough). So just went on the Beta Blocker (Bisoprolol), which has increased now to 5mg per day. After a couple of weeks on the Bisoprolol another scan of the heart muscle was done, and it only had moved to 46% and still showed no change on the damage. Because I had a good year last year my onc was comfortable taking me off Herceptin, but I'm getting nervous (and I think he is too). So I'm seeing a Cardiologist this week. Who knows if the Herceptin still works anyway, but I feel it's my lifeline, and if I can't get this corrected, it also means I can't have other drugs such as TDM-1. My onc is also worried if it might be late onset heart muscle deterioriation because of A/C I had back in 2001. Apparently cases are presenting many years on.

So interested to hear of any experiences out there - the good and the bad!

Cheers Marie

Re: Heart Issues with Long Term Herceptin Use
 

Marie,

I'm sorry to hear you're experiencing heart problems. It would be scary to drop Herceptin.

I have not had reduced EF. In fact mine is high enough (and it increased between echocardiograms) to have me wondering if EF can become too high--possibly the opposite of your problem, and I have no idea if Herceptin or something else cancer-related or treatment-related might be to blame.

I hope they get your situation sorted out soon.

Amy

Re: Heart Issues with Long Term Herceptin Use
 

Hello Marie,
I was on Herceptin for 6 years and my heart stayed steadily ok.
However, due to radiation, 9 years after the radiation I had a heart attack and it was found that an artery had collapsed - it was within the radiation tattoo and I was told that was the cause. It was not the left side of the heart but in the center of my chest. I now take Bisoprolol and have had a stent put in.
I assume you are also being followed by a heart specialist.
I don't really know if it helps or is it's good to take or not, but several people on the site take co-enzyme q10 for the heart and I did all through taking Herceptin and in fact I'm now taking it again. Perhaps you could ask the cardiologist if it would help or if it would be harmful? My cardiologist also has me on a pharmaceutical grade fish oil called Omocar.
Hope your heart gets back in shape and you can get back on Herceptin.
Hugs
Sarah

Re: Heart Issues with Long Term Herceptin Use
 

Marie

Im sorry to hear the Bystolic wasnt as effective as planned. I can only say what I suggested before. Instead of an ACE Inhibitor like Benazepril you could take an Angiotensin-2 receptor blocker like Losartan. You could continue the Bisprolol with the Losartan (or Valsartan, Candesartan, whatever). These 2 classes of meds are commonly used to treat high blood pressure. With Losartan this type of cough is much less likely. Talk with the Cardiologist

Paul

Re: Heart Issues with Long Term Herceptin Use
 

hmmm.....recently learned I have a heart murmur and wondering if its due to the radiation I had to lung or chest. So far no recommendation to cardiologist just adjustment of BP meds. Any thoughts? Cathy

Re: Heart Issues with Long Term Herceptin Use
 

Thanks for replies.... Sarah, I've been taking Co-Q10 every day now for about 7 years (150mg), but have increased it to 300mg per day.

Paul, you have been at my onc appointments - your posts have been all read by my onc, and he said it's likely now when I see the Cardiologist this week, some of your suggestions will be taken up. (I think as an onc he was hesitant to go off 'protocol'??)

I also had radiation at original diagnosis in 2001, but at the end of 2015 I had SBRT on a pesky lung tumour, so I hope that hasn't had an impact (that tumour was in left upper lobe of lung).

Interested to hear any other experiences!

Cheers Marie

Re: Heart Issues with Long Term Herceptin Use
 

Marie

As far as the Q10 goes there was an experiment in Denmark way back in the early 90s where 3 women taking a dose of Coenzyme Q10 390mg dailybecame free of bvreast cancer mets. Lower doses ddid not do this. I have doubts about this but with your docs approval it might be smart to raise the dose of Q10 to 400mg daily. Look at google and read about this old Danish study. Who knows?

Paul

Re: Heart Issues with Long Term Herceptin Use
 

Hi Marie,

There is some research about the subcutaneous herceptin which indicated that three women in a very small sample study had died due to heart failure. When I spoke with my oncology team about the subcutaneous H they were not receptive based on this research. Subcut H is not available in the United States. It might be that you go back to Herceptin the original way through a port or your vein. It could be the delivery mechanism.

When I first started this mess, my EF dropped down to 53. It is now 70. The team asked what was I doing and working out three days a week has maybe toughened up the old heart as well as the COQ-10. Hope this helps.

Take good care,

Jackie

Re: Heart Issues with Long Term Herceptin Use
 

That's interesting Jackie. I just found that study online (HannaH), and four people died - three subcut, and one IV. However, the study interpretation was summarised as follows:

Interpretation
Subcutaneous trastuzumab, administered over about 5 min, has a pharmacokinetic profile and efficacy non-inferior to standard intravenous administration, with a similar safety profile to intravenous trastuzumab, and therefore offers a valid treatment alternative.

Having said that, I had a 'feeling' about the subcut. In all the years of having the IV I never had any side-effects, however, after the subcut, I had flu like symptoms for about 36 hours. So I have already informed my onc that I wish to go back on IV Herceptin, hopefully when my EF improves! And he agreed no problem at all. My team at the Cancer Centre have already informed Roche (?) here in Sydney of this happening to me on subcut, (but of course, it may not have had an impact).

Cheers Marie

Re: Heart Issues with Long Term Herceptin Use
 

Bunty;

I have been on Herceptin for 13 years without a problem until recently --- my last echo a few weeks ago suggested that I dropped LVEF about 10 points. I am normally in the mid 60% range.

They are not sure why....as you know is not typical to see a drop after so many years. Usually if you are going to have a problem it shows in the first few months.

I am still getting my IV Herceptin for now, I am still in the low 50%, and have a follow up echo next week....hopefully it will either be stable or returned to the high. We will see.

Heart Issues with Long Term Herceptin Use
 

August 2015 I was diagnosed with MBC, mets to the bones, 5 dermoid benign ovarian cysts, and high blood pressure. My baseline echo & EKG were perfect. After being on Herceptin for 5 months (I am still on it every 2 weeks), my EF dropped and BP went up. Not being able to take Lisinopril because it gives me a nasty cough Cardiologist put me on Valsartan and Metoprolol. I go for an echo every 6 months, the ticker is back to normal, my dizziness and headaches are gone.