Herceptin and Failure to work???

Hello one and all:

My question is sort of technical, so I am hopeing for 1) Info or 2) palces to get the info.

Background:

Lori was dx Feb 04 with aggressive mets to most large bones hips and up. Was in sever pain and had breathing problems. Was dx er/pr+ and her2++ (almsot 3+'s). She was placed on a protocal of Taxol,carboplatin and herceptin. ( large doses). as the only real chance of any help. Given 10% to make yr. due to spread and aggressivness of disease.
The chemo was every 21 days for 8 cycles.
Near the end of cycles the bc. was seen as gone.
Herceptin was continued for 2-3 more cycles where upon bc returned. Aggressively. No real chance to mets as far as we can tell.

Question: Should she have been taken off Herceptin ( onc. said it failed to work)???

Question: Is herceptin a cure by its self or is it a helper drug for chemo's like taxol, carbo, etc.

Any help would be greatly appreciated.

Lori is presently experiencing her 2nd disappearance of the bc. No real change in the bone mets. except that it hasn't gatten worse??

Phil S-R

Hi Phil,
you're questions are kind of hard to answer because the drugs respond differently in women and there is no way to predict whether or not something will work until it is tried. The tax/carb/herceptin combo is a good one and herceptin alone has also been met with success. Usually herceptin is given with chemo because the two agents work better together. If you think Lori was taken off the drugs prematurely, discuss it with the onc. If there are still any doubts, get a second opinion. This would not be the time to be passive in treatment.
el

Phil,
Herceptin is sometimes effective alone, but is most often effective in combo with other chemo's. The deciding factor seems to be the extent to which the cancer is positive for Her2, and there are currently 2 tests in use, IHC and FISH. IHC has a higher ratio of "false positive" results, so FISH is considered the new gold standard for diagnosing Her2 status.
Do you know which method was used to determine your wife's status? If it was IHC, the tumor can be re-tested using FISH; determining the true Her2 status will help direct future therapies.
Since she is ER/PR positive, have the doctors discussed hormone blocking therapies? Some of the other hormone positive women here have had good results with that approach.
Here's a link to a post on our Articles of Interest page to some information comparing IHC and FISH. The Articles of Interest page has lots more links to info about synergistic Herceptin combos, hormone therapies, etc. Hope this helps.
Lolly

He wrote:
"The chemo was every 21 days for 8 cycles.
Near the end of cycles the bc. was seen as gone.
Herceptin was continued for 2-3 more cycles where upon bc returned. Aggressively. No real chance to mets as far as we can tell.

Question: Should she have been taken off Herceptin ( onc. said it failed to work)???

Question: Is herceptin a cure by its self or is it a helper drug for chemo's like taxol, carbo, etc."


Hello -
Sorry to hear your wife is having such a bad time. Without more specific info it is not easy to figure out why the herceptin was d/c. Is it possible that your wife has some heart trouble that has developed? Was she given a MUGA heart test? Evidence of heart problems would be a reason to take a break from herceptin.

If the simple statement "it failed to work" has any basis, again we would need to know more. Herceptin is a large protein that battles Her-2/neu, a growth-factor receptor, by inhibiting it with an antibody. Chemo drugs kill the cancer cells (as well as other cells) in various stages of division. Herceptin is not toxic in the same way - as it clamps on to the cancer cells (why called a "targeted therapy") and does not allow them to divide, whereupon they die. Her-2/neu plus 2 or 3 cells have extra gene copies and are very fast dividing. When the Herceptin is working (not in all cases or patients) there should be no tumor growth and in many women not only is there stabilization, but the tumors shrink or disappear all together (in my case - also on large doses of chemo in conjunctin with Herceptin).
There are many studies showing that WEEKLY treatment is more effective in cases with fast growing tumors (was so in my case, for example).
The reason that so many of us stay on herceptin alone after chemo is that it is our ONLY "insurance policy" for the type of disease that we have. Even tho there is no evidence of active disease, there is still a fight going on inside our bodies, as there is NO CURE for Her-2/neu type cancers, whether breast, colon, lung or whatever (talking about primary now - not mets).
Your wife should NOT give up - get another opinion or go to another cancer center in a nearby city. There IS some combination that should be able to help her.
I shall pray for guidance and healing for your wife.

Hi,

Could you clarify what you mean toward the end of your post by saying there is "no cure" for her2neu cancers--especially your parenthetical about "primary" vs. mets?

Thanks,
Jeff

Jeff asked if I could clarify my statements about "no cure" and mets vs. primary.

Maybe you know something I don't?
I know of no cure for cancers that overexpress Her-2/neu. They can be controlled and a person can even be NED as I am. But - I still have a disease that needs treatment as it is almost certain to come back without something to combat it. If there was something I could take that would insure my cancer never to return i might consider myself "cured."
Other cancers also overexpress Her-2/neu and they also have a high rate of mets/recurrance.
Here is a quote from Dr. Lerner at Swedish Tumor Institute here in Seattle:


Healing Vs Curing Cancer
Author: Michael Lerner, PhD
Source: CancerSource
Publish Date: 10/18/2002
Review Date: 10/23/2003
(Page 1 of 2) Next Page


Reviewed by:
John Durant, MD, Medical Advisory Board
Barbara Given, PhD, RN, Medical Advisory Board
David Heber, MD, PhD, UCLA School of Public Health
Daniel Nixon, MD, American Health Foundation
Helene Brown, Medical Advisory Board

Michael Lerner, PhD

The words cure and heal are often used interchangeably. The fact is, however, that curing your cancer and healing your cancer are two very different things. References to this distinction are found throughout the best of medical literature. Put simply, healing is fundamentally your responsibility and choice, while curing is the domain of the physician or health professional. The physician may support or diminish the healing process, but ultimately, healing comes from within yourself.


The Meaning of ‘Cure’


Let’s examine the word cure. Where cancer is concerned, this word is used in three ways. The first involves statistics. Some people believe you are cured if you live five years without signs of cancer recurring. In my view, that is not a real cure. That is five-year survival.


The second use of the word cure is the one that really matters for you. By definition, you are cured of a disease if you have been treated and the disease disappears, and you live just as long as if you had never had the disease. That is a cure. A cure of this kind can be achieved with any type of treatment -- or even with no treatment -- as long as the disease disappears and you live out a normal lifespan as if the disease were never present.


The third use of the word cure goes beyond the individual, and it is also very important to you. A specific treatment for a type of cancer is considered a cure if the cancer never returns in a substantial percentage of treatment cases. If a conventional cancer treatment exists that is curative for any form of cancer, I always strongly encourage patients to use it, and use it promptly, because, as we will see later, there are no known systematically curative treatments for cancer among the complementary therapies.


Because life is so deeply precious, and because conventional therapies are the only known current treatments that have a scientific track record of systematically curing some cancers, the search for a curative treatment should always start with conventional cancer therapies.

Hi Jeff,
Repeating what Steph said about no cure. Many of us with the aid of herceptin have found ourselves in a similar situation of anyone else who may be suffering from a chronic illness. We know there is no cure at this time, but what many woman find is they eventually have no evidence of disease. That is why you will see NED show up on some of the posts. It's as close to a cure as we can get to at this time. So we chose to stay on herceptin as an insurance policy so that any microscopic cells carrying the her2 gene will (hopefully) not be able to divide and thus creating more tumors.
There are some dr's out there who feel that once the scans show up clear there is no reason to stay on any drugs until there is another recurrance. That would make me nervous, but that is an individual choice. That is why it is important to stay with an onc you trust. And use this board to get info from the women who are on the front lines. There is alot of knowledge and experience here.
El

Thanks, Steph and Eleanor, for your additional posts. I guess I'm confused, because while I know that many, many women with metastatic disease are having great success staying on herceptin, I haven't heard of anyone who is using herceptin in the adjuvant setting staying on it for an indeterminate time. I know that NED is used to denote women who have had metastatic disease who now show none, but I'm still confused as to whether you guys are advocating for all her2+ women (with mets. or not) staying on herceptin indeterminately...

Thanks--and sorry for my slowness on all this.
Best,
Jeff

Are you saying, then, that people who are Her2 positive, will get their cancer back? For sure? Hasn't anyone with Her2 NOT had a recurrance?

Barb

I have the same questions as you, Jeff. I have an appt with my onc. soon to ask about getting Herceptin before mets appear. If mets are a sure thing, (is that correct???) then why not try Herceptin to see if that will keep them at bay?

Jeff wrote:
" I haven't heard of anyone who is using herceptin in the adjuvant setting staying on it for an indeterminate time"

Blame the FDA for this. The insurance people will only pay for what the FDA has approved, including clinical trials.
I wanted to have herceptin when I finished my first rounds of chemo with adriamycin and taxotere. My onc advised against the herceptin/adria trial for the "heart problems" reason. Too toxic when given together.
My health plan would only pay for herceptin if my disease returned - which it did by the time I was only 6 months off original chemo.
I do know a couple of women now who have virulent disease like mine that are getting herceptin off protocal at HMO's. Their docs are exceeding kind and know the risks for these women.
Yes, I advocate that as many women as possible with her-2/neu disease be given herceptin as a life-saving measure! (Hang the FDA!) There is enough production now, so that is not the problem. At least it can prolong life in many of us until there is something else, which is just around the corner.

Hello:

Thanx'z for all the responses. I guess what I was looking for was a reason why the tax/carbo/hercpt mix worked at reducing her bc. (doesn't seem to have done much for her bone mets). But the herceptin by it's self failed. The bc came back in a big way.
She is now on tamoxofin and is oncew again NED in the bc. Yet I wonder about herceptin. WHy would it seem to fail when she almost 3+'s ???
anyway when you are stage 4 any help is good and most everyone seems to be helped by herceptin. Is it just the earlier stages that are doing so well?
PHIL S-R

Hi Phil,
It's known that Herceptin in combo with chemo drugs is often much more effective than alone, the studies call it synergy. That's probably the reason the trio worked, but Herceptin alone didn't.
I don't think we'll know the answer to why Herceptin on it's own works to maintain remission in some cases and not others until more studies are completed, unfortunately. Those of us with stage 4 disease on Herceptin monotherapy and NED just hope we stay that way forever, but of course no one can promise that for us. In the meantime more drugs are in development, many are in trials and on the fast track for approval, so it's a very hopeful time.
Am so glad Tamoxofin is working for her, that is great!
Take Care,
Lolly