I hadn’t expected the news I was given today at what I assumed was going to be a routine visit with my oncologist at Dana Farber before my herceptin treatment. I knew that I had had an echocardiogram last week but since I had heard no news I figured the numbers were good.
And yet there was a nagging suspicion yesterday as I drove in the car. I was getting that fluttery heart thing I had gotten before they took me off chemo last time–just sligthly though. I thought it was possibly a little anxiety or maybe dehydration –my water intake had been low. So today when Dr. Anderson told me that my left ventrical ejection fraction had dropped to 45, and that they had to stop my herceptin treatment immediately I was shocked but not completely surprised.
I remember the first time I heard about the drug, herceptin. It was the week between Christmas and New Years and I was trying to make an appointment for a second opinion at Brigham and Woman’s hospital after being diagnosed at Winchester. I was having a hard time getting through to the docs at the Brigham and knew my time was ticking so I drove to Winchester to pick up my records which I was going to hand deliver to Dr. Christian. As I sat in the parking lot and read the pathology report, the reality of my situation finally hit home. I was her2/neu positive. This I knew from my many late-night-internet-breast-cancer-information-searching-sessions was not good news. The fact that I was her2/neu positive meant my cancer was very aggressive and the chance of recurrence was greatly increased. When I got home, I called the nurse at Winchester to get clarification. She said, “yes, you are her2/neu positive but thankfully we now have the drug herceptin that specifically battles that form of breast cancer.”
It didn’t make me feel that much better. I researched the drug. Herceptin which came into play about 10 years ago was the newest form of chemo –targeted therapy. As opposed to the other forms of chemo that hit all fast growing cells and make you lose your hair and get mouth sores and throw up, herceptin only seeks and destroys cancer cells allowing you to live a normal life while on the therapy. Still, the side effects were present and the thought of those and the fact that I had to have infusions every 3 weeks for a full year made me less than thrilled to have to be taking the drug.
But after AC and Taxol, herceptin was a breeze. I started to look forward to my treatments because they didn’t make me sick and I knew that this drug was keeping those nasty her2/neu cancer cells from reappearing in my body. After every infusion I felt stronger; armed for battle with a body full of herceptin ready to fight.
I have known all along that the herceptin, especially when preceeded by AC is very heart toxic. I have been through this once before. But I was really hoping it was the Taxol that messed up my heart last time. The problem now is that they can only stop and re-start herceptin so many times. Actually she told me that they will do it twice. This is my second time. For now I am off herceptin for 4 weeks. After that time they will re-test my heart and then Dr. Anderson, along with my Cardiologist (Doogie Howser) and myself will decide what to do. Dr. Anderson thinks that this may be it. That they may not be able to give me any more herceptin. The risk that of my heart not returning to normal function gets greater with each incident. They are never quite sure which time will be the time that my heart just continues on the bad path to congestive heart failure.
I do not want to stop the herceptin. I do not want to give those pesky cancer cells any chance to re-group. This scares me. Congestive heart failure scares me. But I have faced scary things all year; so what. Because,on the other side of this, I ran a race last week and came in 5th in my age group. I did this not knowing about my bad heart. Who knows, maybe if my heart was better I would have come in first. So I will continue to run and pretend I don’t know. And once again….we will wait and see.
I’m hoping and praying this time it will work, temporarily being off the Herceptin so your heart rate will get better. Is there another drug they have for the her2neu? It sounds like the Herceptin is the newest but is there anything else.
I just want to scream with what your going through. I’ll keep checking your blogs.
Miss you – Love Judi
Ah, no. That sucks. Hang in there and keep talking about it.
And hey … what about this race? That is AWESOME!
enough is enough – you keep training for your next race Fran, don’t let something like some heart problem keep you from doing what you love, hugs,
I too had to stop herceptin because of the drops in my ejection fraction. I protested to my onclologist that I was more concerned about breast cancer than a heart issue (which I figured I could deal with later). I saw herceptin as my miracle drug/rabbit’s foot. But she insisted that while we did not know whether my breast cancer would ever recur, which it probably would not, we KNEW that I was sustaining heart damage. She said she was at an oncology conference which addressed how many cardiac issues are expected in the future from today’s chemo patients. She stressed that cardiomyopathy is not fun. Her policy was to discontinue herceptin if there is at least a 10% drop in ejection fraction, and not to resume it unless the ejection fraction returns to its previous level. I never went below 55% EF but she was firm. I guess it is that old “First, do no harm” mantra.
Anyhow, she did tell me that some studies show that just a 9-week program of herceptin may be sufficient, and that is the protocol in some countries. The one-year program is really an arbitrary time, as we really do not know how much is needed. I only hope we got enough, but we are both fortunate to have been able to get what we did of it.
I was stage two at diagnosis (4.2 cm tumor) almost two years ago, but am so far doing very well. Following my mastectomy, I had six months of chemo (A/C then taxol with herceptin) followed by an additional few months of herceptin.
I came to your blog via toddler Planet/ MOthers with Cancer, where I am a lurker. Your writing is excellent reading IMO.
Best wishes to you,
Jyber/Joan (from the Philadelphia suburbs)
Franny, Positive thinking is very important. I believe it heals all. I will be thinking of you. JB