Getting Off Herceptin
 

To all my HER2 Sisters,
After 9 years of treatment and endless ECHO-cardiograms, I made a personal decision to discontinue Herceptin last February.
Although my heart was doing well, my ELVF was slowly declining. Initially it was measured at 70%, the last one showed it at 50-55%. I discussed this with Dr. Slamon at the spring AACR meeting. He supported my decision with the provision that I be closely monitored. I mentioned that I had been using the HER2 Serum test and that my oncologist would continue to include that test along with other standard markers. Dr. Slamon was completely comfortable with my plan. I will also be measured using the CEA tumor markers as it was only the CEA test that had indicated my recurrence in 1999. Even then it was only slightly elevated @ 2.59
My HER2 Serum test has always been in the 5.2 – 7.8 range which is well within the normal range. I will continue to be monitored with MRI brain scans.
I have been feeling very well lately. My vision has markedly improved after having cataract surgery last year on both eyes and I have returned to driving again.
I do not recommend discontinuing Herceptin to everyone. When I was first tested for the HER2 gene in 1999, the pathology report stated that I was strongly positive by IHC 3+++ and also stated “strongly 3+”. My initial response to Herceptin was nothing less than a miracle. I personally know of only few others who were as highly receptive as myself.
Hugs
Christine

Thanks Christine! Helps.

Thanks for the info Christine.

Amelia

Christine,

Congratulations on your decision. You deserve a break you have truly earned. Your plan for following up sounds like a good one. I'm praying for your continued success with fighting this disease.

Best, Joan

Congratulations on being not only a trailblazer but a hero among us!

Best wishes for continued good health,Christine!
Marcia

Good luck Christine on your brave, and well-informed decision. I am so happy to hear that you are feeling well.

I second what Marcia said - you are a trailblazer and hero among us.

God bless you and Joe.

all the best
caya

Congrats Christine, but what is the her2 serum test and is it routinely given by oncologists? Ceesun

Good for you on making a well informed decision for yourself. Thank you for providing such a wonderful and informative group for us.

Christine, I'm glad things are continuing to go well for you and that you are feeling good. It was a gutsy move to cut the cord on the Herceptin - just further proof that you are a gutsy lady!

Take care
Chris

Christine, you and Andi are both brave ladies. I applaud your decisions to get off Herceptin. It's a big move. I wish the best for both of you.

p.s. My path report also indicated "strongly positive" Her2 +++3.
I consider myself extremely lucky to get Herceptin from the start.

Congratulations Christine in you decision. You are truly an inspiration to the rest of us. Enjoy your well earned freedom. God Bless.

Congratulations! 1990 was the year when I had my first brain (tumor) surgery. And the recurrence has been well controlled by the Gamma knife radiosurgery in 2001.

Your MUGA scores are amazing! Guess you have had a good heart to begin with.

And you look so good in your picture!

Well Christine
 

that sounds like a plan! You truly are the poster person for Herceptin and an example of the good it does for so many. You made a sound decision and it's good to hear your vision is better and that you're driving again. I wish you, and Joe, the best!

One of her secrets - WALKING!
 

Glad to hear that you are still holding your own and so well!

What Christine failed to mention is that she is a dedicated WALKER. She joined a walking group and has a great trail near her home. I think you said you walk 3 miles at a time? Or is it ?? miles, 3 days per week?

Anyway, as they say: "The proof is in the pudding."

I need to follow this example myself to try and get my MUGA back up! http://her2support.org/vbulletin/ima...ons/icon12.gif

Lung Abalation information
 

Joan
I am very interested to know how and where the radioabilation produre was done ; and also learn about it's success. Thanks for your reply.

Quote....If we stop learning we cease to exist...Christine

her2 serum test
 

Hi Leesun
The HER2 serum test has been FDA approved for metastatic breast cancer for the past few years. I feel it is a great monitor test that for her2neu overexpreassers. With a simple blood draw, the laB,Quest) has the assay test that was formulated by Bayer.
It is a very sensitive test that can show if your here2 cancer cells are progressing or decreasing. A baseline test comes first, then every 2-3 months to see if your chemo has worked or to see if they are progressing. Iam no longer taking herceptin and will be monitor any progression withis test. It has been on target forme over the past 2years. Normal goes fom 4 to 15. My average with hrceptin was arround 5 to 7. my recent test results w/o herceptin is 7.8. Iam having this test every 2-3 months as planned. I also take Cea tumor marker test that helped me in 1999 DX my relapse.
Ask your onc if he is intersted in this test for her2 cancer patients. Ifind it to work for me, while other tm tests sre and invalid, except for the cea tm test that has been my backup. Sending you well wishes, Hugs Christine

You are my most profound inspiration, Christine. I will follow your decision and progress with hope and pure optimism!

just refreshing the post

Thanks Joe and I just wanted to say that you, Christine, are a breath of fresh air. So, so happy you are doing so well.

Hugs and Many Blessings,

Mary Jo

Thank you Christine. You are so much of an inspiration to all of us!