Is it ever too late to try Herceptin

[Terry Kolhede]

Hi- after 12 years I had a reoccurence of breast cancer in 5/03. Mastectomy in Aug. Chemo complete in October (A & C) and on Arimidex ever since. I AM HER2 POSITIVE.

Last May, after reading about the positive Herceptin news I asked my oncologist 'shouldn't I be on this?' She said no.... " the trial showed the benefit was for women with lymph node involvement. we couldn't check your node status as you had some removed 12 yrs prior (at time of lumpectomy - and they were fine) and we did feel it good to go in there again. And it's too late to get herceptin now. You are currently doing well almost 2 yrs later (3 yrs this May) so your reoccurence is already minimized"

What do you guys think??? I've had a couple of people tell me to get a new oncologist or a 2nd opinion.. that herceptin would definitely be of benefit.
Appreciate any feedback.

[al from Canada]

Dear Terry,

My very unprofessional opinion is that if your tumor was HER2 AND you've already had a reoccurance AND we also know that HER2 over-expression is associated with hormone treatment resistance AND you are currently not taking herceptin, I would be getting a little nervous and be thinking about changing oncs. Just make sure you are at least ICH3+ or IHC2+ and FISH 2+. anything less and you may not require it anyway.

Good luck,
Al

[AlaskaAngel]

An opinion from Al carries quite a bit of weight around here.

I am 3 years out from treatment, 4 years from diagnosis, and still NED, and not happy that I am among those who were prevented from being in the Herceptin trial to find out whether or not Herceptin helps us.

Everyone seems to think we are such a small group that we aren't worthy of a clinical trial, but if we are such a small group then how come so many are finding their way here?

Unless you are not strongly HER2 positive as Al mentioned, I too would try another oncologist, perhaps one who specializes in breast cancer rather than general medical oncology.

AlaskaAngel

[olinda adeane]

Am interested in what AL has to say on correct usage of herceptin. Am in england and had stage 11 grade 3 lymph node positive and have had AC to shrink tumour followed by lumpectomy Aug 2005 and 7 weeks of radiotherapy. I had two differences of opinion, the hospital in which I was diagnosed claimed I was IHC+++ but the cancer specialist hospital in which I was treated re tested and said I was IHC++ and fish negative and that this was a better thing to be. As there has been so much written about Herceptin, I just had the tumour re tested six months after my radiotherapy, by the original laboratory who again find it IHC HER2+++ Had I been treated there I would automatically been given herceptin. We await the result of the fish test. If it is negative, should I still worry that I am indeed IHC+++ (Perhaps the tumour was tested in a different area?) and that I should ask for Herceptin, or is the fish test still definitive? Sorry about length of question

Hi,

I live in Baltimore. Johns Hopkins is calling back all Her2+ women within a year of treatment to come back and get on Herceptin. Another onc. here is calling back all of his Her2+ patients within 3 years of treatment to get on Herceptin. I'd fight for it.

Olivia

[Barbara H.]

Hi,
I would get it no matter how far out I was. My recurrence didn't occur until 6 years later. (lungs, liver, brain, through out my lymph system) With 2-3 treatments of Herceptin my turmor markers went into the normal range. That was a in May/June 04. I think I would have benefited I had been able to get it in 98.
Good luck!!
Barbara H.

[kristen8594]

Well this is a subject that Alaska and I have been going back and fourth for a while. My new train of thought is to go to Boston to Dana Farber for a second oppinion (I live less than an hour away anyway). I just don't know if I want to rehash everything all over again, but then on the other hand I relive it in my mind everyday anyway!
I wonder if my current onco could be swayed into the herceptin. She did tell me on my last visit that if I had more than one positive node than she would consider it.
I am so very confused on this subject.
Thanks
Kristen

[Terry Kolhede]

Thanks so much for the responses. I did have the FISH test and it confirmed HER2 positive. So it sounds like I need to fight with Kaiser to get on Herceptin. I hope it will still have benefit.

[newgg]

I have also just joined the "late" herceptin group. Did A/C and taxetere and rads. Am one year out of chemo and one node positive. Have been discussing this with doc for several months but after the conference in Texas......had no problem getting my oncologist to agree to every 3 week infusion of herceptin. Will get the echo and if all is A OK with that and BC/BS.......will start with loading dose on Thursday. Hope some one is tracking us "late" gals !

I feel gooooood about getting it and consider it the icing on my prevention cake!!

[Cheryl E]

Those of you getting herceptin 2-3 years out-are you ER+ or ER-?

[newgg]

yes.......ER + and on arimidex for past year.