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Anyone with heart damage from Herceptin?
After a new occurrence of BC in my other breast (previous was ER/PR- and this one is positive), I was put on Herceptin with Taxotere and Cytoxin every 3rd week. My oncologist merged his practice with another one due to new Medicare policies and service dropped off severely after that. For one thing, I was not given a follow-up MUGA scan even after my insurance case manager called to remind them I was due.
In addition to becoming severely immunocompromised which resulted in near fatal double pneumonia, whooping cough, and a potentially lethal fungal infection which I fortunately survived due to a good team of doctors and a 11-day hospital stay, it was found in a new MUGA performed in the hospital that my ejection fraction had dropped from 40% - 45% when I started chemo down to 26%. I now have to be on heart medication and my new oncologist has stopped all chemo, including Herceptin, at least for the time being.
I'm wondering if anyone else has suffered heart damage from Herceptin, how it's changed your treatment, and how it's affected the rest of your life. I'm still very weak from having been through all I have and tire easily but I'm also still recovering and my new docs say to expect that for a fair while. But I'm not sure what this reduced ejection fraction will mean longer term. (My cardiologist indicated the problem can only be corrected surgically, not just through medication but I still have to have some other cardiology tests.)
What have other folks experiences been when experiencing heart damage from Herceptin?
By the way, another lesson I learned from all this is that you've got to stay on top of your oncologist and watch them like a hawk. If you're at all suspicious that you're not receiving the attention you she be getting, change docs, even in the middle of treatment. If you don't, it could literally cost you your life.
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