Herceptin More Than 2 Years?
 

Any on this forum who have been taking Herceptin more than 2 years? Have you experienced any adverse side effects? Have any of you long term Herceptin users changed receptor status?

Valerie in Michigan

Valerie,
The length of time that a patient receives Herceptin is based on staging. If you are stage I or II then the accepted protocol is 1 year anthough some oncologists may prefer the protocol used in the HERA trials - 2 years.

Many patients who are Stage III & IV have been on Herceptin for more than 2 years.

Christine had been on it for almost 9 years. There are really no known long term side effects to Herceptin although some patients may see a gradual decline in their heart's ejection factor. This is usually treated by discontinuing Herceptin for a period of time to enable the ejection factor to bounce back, but this is rare.

At San Antonio, Saturday night they showed a slide of a study that showed that 20% of bc patients change HER2 status. Either from + to - or from - to +. They did not differientiate.

Regards
Joe

Bumping this up as I know there are lots of other her2 gals that have been on herceptin two yrs and longer. Must be the holidays keeping them busy. They ought to check in sometime soon. :)

Chelee

I have started my 6th year of Herceptin recently....I am stage IV, still no problems and my muga 4 mos. ago was great.

Hi Val - How long have you been on?
I have been on Herceptin since 2004, in March it will be 5 years for me. Side effects? Stiff joints, runny nose, nothing major. My cardiologist says as long as I exercise every day my heart should be fine and so far he is right. I am still NED so I don't have a visible tumor to test to see if Her2 reactivity has changed. How about you?
Love Kim from CT

I was so glad to s ee this post before Christmas, have been gone so am just now responding. I am starting my 3rd year on Herceptin and want to continu3. I have had a very slow ejection reduction and have had just alittle flu-like symtpoms the day or two after treatment. I had only known one other very pro-active survivor who was doing this and had thought maybe I was being too paranoid. This is my 2nd time to have BC( 1st- 1992 estronge postive, 2nd 2006- HR2. ) I was node negative this 2nd time, but after having this 2nd go thru am being very aggressisve, not to have again!! My Dr. is supportive, so I have felt good about this and luckily my insurance has continued to pay without protest. Has anyone had problems with insurance on this?

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 !