Evidence Mounts on Heart Failure After Trastuzumab in Breast Cancer Survivors

[sarah]

Wow! great discussion! yes we all hope for more directed, personalized treatment.
Just wanted to point out that I had a heart problem, heart attack (didn't know I'd had one!!), 100% blocked artery, had to have an angioplasty and stent put in.
I saw 3 different cardiologists at 2 different hospitals and of course asked the obvious question, particularly since I'd been on Herceptin for 6 years but had now been off it for nearly 2 - "is it the Herceptin?" and all 3 immediately said "No! it's the radiation" 2 of them showed me my radiation tatoos. I had heart sonograms (echographie du coeur) every 3 months during Herceptin and it was always good and constant.
Brenda thanks for the reminder about the teeth, I am pretty good about it.
So I think anyone who had radiation, particularly outside the breast area, should be followed by a cardiologist and be aware of chest pains and breathing.
While I'm sorry my heart and lungs were damaged, I'm just grateful that after the recurrence and the very scary news it came with, that I got Herceptin for so long and radiation despite radiation's side effects, which by the way the New York Times (and I'm sure other papers) are talking a lot about.
I'll make sure that everyone in our support group, particularly those who take Herceptin and have radiation, know the importance of seeing a cardiologist and not just for the Muga or echo.
Love this site and appreciate your info, great that you keep us so informed.
I am so terribly sorry Greg and Phil for your losses and send you a cyber hug. You are exceptional people to keep so involved and it's so appreciated.
health and happiness
Sarah
sarah

[phil]

Bob, please keep us posted on your wifes t dm-1 tx. Good luck, God Bless . It is a great drug for her2, . Recent NY Times article ( peter canellos , (sp ?), June article ) quoted researchers as saying it has the BEST survival rates so far for ANY her2 drug ! , and in EMILIA decisively outperformed tykerb/xeloda . L. has been doing great on it for nearly 2 yrs. Some are at 4 yrs and counting. It is very common to have a fever, chills w/in several days of taking t dm-1. That s/e often goes away after several doses as body adjusts to it. We did go to er once or twice w/ fever over 100.5 . no ongoing problem. The one time we ignored the fever , it turned out to be sepsis related to stents L. had , nearly killed her, so follow protocol for fevers !
cardiac risks have to be weighed against risks of a very aggressive cancer. Lorraine was in good physical strength prior to cancer , not a smoker, not much of a drinker, regular exerciser. She has passed every echo w/ flying colors . 6 yrs of near continous herc ., last 2 herc w/in t dm-1. My mantra for aggressive cancers is aggressive tx first, w/ as much wholistic living as possible w/in that tx., adding more and more wholistic tx as sxs subside. Conventional tx first, alternative as secondary , for the early part of Stage IV fight. I feel that many cancers will turn out to be related to pervasive chemical pollution in environment, coupled w/ genetic susceptibility , that we cannot avoid simply by diet, exercise , etc. Nothing wrong w/ healthy living, and it can strengthen us greatly for the battle, and future healthier living.

[StephN]

This is a thread that is appropriate for me.

I was on Herceptin for almost 8 years. My MUGA dropped a little once and I took a short Herceptin holiday, then resumed, remaining NED during that time.

I had been taking CoEnzyme Q10 for a couple of years prior to my diagnosis, on the basis that heart problem run in my father's side. Continued to take the supplement most of my 2-year active/chemo/rads treatment time. Still take it.

Also ate heart healthy, low fat diet, which became more organic upon diagnosis.

My curious side has to wonder if factors like family history, diet, exercise level, lifestyle were incorporated into this "evidence," which could combine with the affects of Herceptin for heart failure.

I also had Adriamycin, Taxotere and Taxol, which are also cardiotoxic. In my case there are a number of ways my heart could be affected besides taking Herceptin.

Bob, let us know how it went with the T-DM1.