Herceptin treatment on hold

[November]

I'm new to the group. Diagnosed on 10/14/2011, had bilateral masectomy, final pathology showed Stage 2B, ER+PR+ HER2+. I started my chemo treatments on 01/13/2011, TCH (taxotere, carboplation, herceptin). Hereceptin scheduled for one year, currently herceptin treatment on hold due to decrease in heart function (last one received 02/24/2011). Has anyone experienced this? Now I'm not only concerned about not having enough herceptin for treatment of cancer, now concerned about heart as well. Also trying to do my best to take care of my six year old son while I am receiving treatment. At times everything seems so overwhelming.

[Becky]

This does happen and you need a Herceptin break. A supplement that does help some people is CoQ10. To get the most benefit, one needs 400mg per day. However, when starting CoQ10, you need to work up to that amount (and decrease slowly too later).

For example, you might want to buy 50mg pills. The first 3 days take one pill with breakfast. One the fourth day, take a pill with breakfast and a pill with lunch and do this for 3 days. After that, take a 50 mg pill with every meal. Then buy 100mg pills because after 3 days of 50mg with every meal do 3 days of 100mg with breakfast but 50mgs with lunch and dinner. I think you get the picture - do this until you work up to 400mg every day (but space it out and take the least amount with dinner so work up to 150mg for breakfast and lunch and 100mg with dinner). CoQ10 can interfer with sleep with some people so you can take 200mg with breakfast and lunch if this happens to you.

You should talk to your onc about it so he knows but CoQ10 does not interfer with Herceptin and you can take it when you go back on Herceptin to keep things strong.

You should also talk to your doctor on if there is anything else you can do.

[Sheila]

Many of us have had to see a cardiologist to keep the heart function adequate. I as well as others have been placed on Lisinopril, which is an ace inhibitor usually used for blood pressure, but also strengthens the heart. I am also on Coreg, which is a beta blocker to strengthen the heart...and CoQ10, as Becky said, as well as walking....lots of walking! I have been onb Herceptin for 9 years straight!

[Paty]

Welcome to this wonferful board in time of crisis. My first chemo infusion came along with herceptin, but i had too much toxicity and could not stop vomiting. They had to put me in hospital for two days more because of my symptoms. My doctor decided he would not give me the herceptin along with the chemo because it was risky if I presented that many bad symptoms. I took my 6 round of chemo, then I went to radiation and finally got 17 infusions of Herceptin. So far, so good. NED up to now.

[JennyB]

I too had to have a Herceptin holiday, it's seems to be quite common, I really freaked out but it turned out I was only delayed by a couple of weeks and then completed my treatments. I upped my CoQ10 and also took liquid fish oil twice a day. I find getting extra exercise quite tricky because I have 2 little ones and its the wet/hot season here so not really conducive to walks but I do go to the gym every week.
My MUGA went from 65 early in the treatment to 49 when it was stopped. The last test I had showed 57% and I was re-started again.
I wish you well, let us know how you go.

[pffida]

I, too, had to take a five week Herceptin break. But when I resumed, I received weekly treatments instead of every three weeks. The more frequent, lower doses solved the problem for me. I had about 8 months of treatments, so it was a little inconvenient. I'm five years out and all of my follow-up echos have been normal.

[Jackie07]

Hi,

My recurrence in 2007 was also a stage IIB. I had to stop due to lowered MUGA after 18 weeks of TCH and just 4 weekly Herceptin.

It's been almost 5 years (June) and I've been doing fine. I do have a brain tumor history which is unrelated to BC - although it's probably related to the genes. There seems to be an HNPCC connection to my family cancer history.