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

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.

[AlaskaAngel]

I have requested that one chat night be set aside for discussion about and for the "Lost Regiment of HER2+++'s" (those who did not receive Herceptin as part of their original treatment).

AlaskaAngel

Alaska Angel - I am in the same boat - 3 years since lumpectomy and about 2 1/2 out of treatment and my onc. refuses Herceptin saying it is too far out of chemo. I don't visit this site very often but have seen your posts on the bc support page. What can we do about this? Can we just call various oncologists in our areas and ask for a consultation until we find someone who cares? I am really disappointed that Herceptin was not offered with my original treatment. I did ask for it and the onc. said you'll get it if you have a recurrance! I know it is no good arguing with my onc. - he is good but firm in his decisions. Would love to talk to you about strategies. (Hope I can post this as I have not been on this board for ages.)

[Barbara2]

I was 2 years out, ER+and on Arimidex for 2 1/2 years now.

[julierene]

My recurrance was 2 years out. I was node negative with a 2cm er/pr- HER2+++ tumor. I was not allowed Herceptin either. Now with liver and bone mets, I wish to God I would have pressed harder for it. Bottom line was, I would have had to go to a different Onc back in Oct of 2004 to get the Herceptin. Now that Oncs are allowing it for early stage'ers, why not give it a try? Heart problems seem very managable. I feel such guilt for not switching my Onc to get the Herceptin. It's not worth that guilt. It's your life.

[AlaskaAngel]

Ann,

Yes, probably if you are persistent in consulting oncs you can find one who will prescribe it, and I don't know if you would have to pay for it. (This is probably the one instance where the worse your cancer characteristics are the more helpful they might be.) It probably would be best to get a prescription as soon as you can and then deal with the issue of paying for it, since the farther out we get the harder it may be to actually get it. Keep in mind, though, that it only seems to work for less than half of those who are HER2 positive.

At this time I am told the chat is scheduled for April. I think there are a fair number of us who are concerned with this issue and are determined to deal with it.

AlaskaAngel

[Terry Kolhede]

Hello everyone... wanted to give you all an update on the subject of taking herceptin 2+ yrs after Chemo. To summarize my wife's situation.
• Diagnosis in 5/03 (reoccurence of breast cancer in same breast after 12 yrs!- characterized as a separate occurence) This time mastectomy (couldn't check nodes this time) A/C chemo and on Arimidex since 12/03. All is OK up to now. She is Her2+
• Contacted oncologist last April after all the Herceptin news,and asked shouldn't she be on it. At that time she said NO. You're nearly 2 yrs out so your prognosis is better already, to late after chemo,etc.
• Asked the question again... she said tends not to recommend it but said "I am willing to give her the herceptin every 3 weeks for a year prophylactically as long as you are aware that the potential side-effects may equal the potential benefit in treatment 2.5 years out from the diagnosis"
She said if we want to do this, then she'll have to do a heart scan (of course) and PET Scan. The PET Scan freaks me out (the male trait of what you don't know won't hurt you) I hate to have opened this 'can of worms' but I'm just worried about the aggressiveness of HER2+ tumors and felt the potential benefit outweighs the heart risk (which seems to be manageable)
What do you guys think???

[Becky]

Terry


Don't be afraid of the PET scan (and opening a can of worms). If there are worms, you should know so you can combine chemo with the Herceptin for the best possible results (if there are mets (aka - worms)). I am sure everything is fine but I know what it is like waiting for ct and bone scan results and brain MRI results. The wait is always scarier than the test is.

Most research shows that Herceptin helps more than half the women on it. One third respond just to Herceptin alone. One third respond to it with chemo (in the metastatic condition - but the Hera trial results say that there is a 46% reduction in recurrence when using Herceptin after chemo/radiation and this was using women with well over half having nodes affected). If you believe Herceptin will help your wife this far out, go for it. Even if science proved it would do nothing this far out (and they haven't) but you BELIEVE it will, then your good karma will help you out. And good karma can be everything.

I can change the moderated chat topic of "Late Herceptin" to an earlier date. I will post a poll to change it into February or March (or change a free forum chat) to this subject in order to help out those seeking Herceptin late.

Warm regards

Becky

[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

[RobinP]

Sorry to respond late to this, but I have my two cents to add. Late herceptin may be more than fifty percent responsive in the adjuvant setting if you have the right form of the receptor, p185 rather than p95 exclusively. Furthermore, if you could prove that you have p185 and pTEN, an oncogene that increase the effectiveness of Herceptin, then you may feel more comfortable doing late herceptin. I see very little down side to the nine week regimen that had nearly a fifty percent increase DFS at three year follow-up with zero cardiac events. Remember if you have p185 your response could be as high as 70% rather than 50%. (Note to see 2/13/06 post by me on 70% possible benifit of adjuvant Herceptin.)

Perhaps, more people in the gray zone, with little relapse risk, would consider late Herceptin, knowing that they had p185, pTen and the safer 9 week regimen.

Hi- My recurrence was 5 years out- to my lungs, collar bone, between my lungs and under arm area. My onc put me on xeloda and herceptin. My first scan showed a big shrinkage and my following scan showed NED. Of course, lots of prayers too! God Bless- Cathy