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Valerie in Michigan · 01-09-2009, 11:28 AM

Hi Sheila,

Just wondering from reading your bio, did you only have superclavical node involvement and no organ mets? What is the current status of your SN?

Looks like you have taken Herceptin continuously since 9/03. Does your onc. intend to continue indefinitely? Do you still have your implant? Who is your onc. and hospital?

I am beginning my 3rd year on Herceptin. Was diagnosed with inflammatory breast cancer 1/07 and started TCH immediately and had a complete response. I was NED at the third cycle mark and completed 6 cycles total. Decided to postpone the surgery and radiation. Stopped Herceptin for 6 weeks then. When decision was made to proceed without surgery or radiation, my onc. convinced me to start back on Herceptin and todate he feels I should continue indefinitely. I am still NED, being scanned with US, MRI and PET/CT bi-monthly rotating. Each scan is better than the last, with even my scar tissue regressing. I have had my entire treatment at M.D. Anderson/IBC Clinic.

So far my heart is functioning optimally, with no EF problems. I learned through a consult with one of the top cardiologists specializing in chemo toxicity that a blood marker test called a BNP can be done very frequently to monitor heart function problems, eliminating the need for more frequent mugas and cardiac ultrasounds. He also indicated that the muga was not as detailed regarding chemo related problems at the cardiac ultrasound.

My concerns long term lie with cardiac problems obviously, but also I am quite concerned that long term use might lead to Her2+ receptor status change to -. I have also been told by a leading oncologist that if Herceptin proved to be effective initially, then should I stop it and reoccur, that starting back on it again would have the same effectiveness.

I am uncertain as to how effective Herceptin continues to be the longer it is given? There are no tests to determine this. I do however feel certain my immune system is responding each time I get an infusion, particularly with respect to the 5% mouse antibody. This leads me to feel that eventually the body will find a way around it.

Would encourage other thoughts on this matter !

01-09-2009, 11:28 AM	#7
Valerie in Michigan Member Join Date: Apr 2008 Location: Huntington Woods, MI Posts: 11	Hi Sheila, Just wondering from reading your bio, did you only have superclavical node involvement and no organ mets? What is the current status of your SN? Looks like you have taken Herceptin continuously since 9/03. Does your onc. intend to continue indefinitely? Do you still have your implant? Who is your onc. and hospital? I am beginning my 3rd year on Herceptin. Was diagnosed with inflammatory breast cancer 1/07 and started TCH immediately and had a complete response. I was NED at the third cycle mark and completed 6 cycles total. Decided to postpone the surgery and radiation. Stopped Herceptin for 6 weeks then. When decision was made to proceed without surgery or radiation, my onc. convinced me to start back on Herceptin and todate he feels I should continue indefinitely. I am still NED, being scanned with US, MRI and PET/CT bi-monthly rotating. Each scan is better than the last, with even my scar tissue regressing. I have had my entire treatment at M.D. Anderson/IBC Clinic. So far my heart is functioning optimally, with no EF problems. I learned through a consult with one of the top cardiologists specializing in chemo toxicity that a blood marker test called a BNP can be done very frequently to monitor heart function problems, eliminating the need for more frequent mugas and cardiac ultrasounds. He also indicated that the muga was not as detailed regarding chemo related problems at the cardiac ultrasound. My concerns long term lie with cardiac problems obviously, but also I am quite concerned that long term use might lead to Her2+ receptor status change to -. I have also been told by a leading oncologist that if Herceptin proved to be effective initially, then should I stop it and reoccur, that starting back on it again would have the same effectiveness. I am uncertain as to how effective Herceptin continues to be the longer it is given? There are no tests to determine this. I do however feel certain my immune system is responding each time I get an infusion, particularly with respect to the 5% mouse antibody. This leads me to feel that eventually the body will find a way around it. Would encourage other thoughts on this matter !