herceptin forever?

[PinkGirl]

Why do we only get a year of herceptin before we develop mets? Why don't we just keep taking it? I know about the cardio problems, but why not keep taking it if your heart is okay? Is this a dumb question?

[Mary Anne in TX]

I have the same question! I'm working right now to continue after 14 months. My insurance is denying me again, but I will just keep fighting if my onc will help me do so. Could be mute ques. if my markers go up one more notch. But I do agree. Why not, if our heart says yes? ma

[Andrea Barnett Budin]

Pink Girl and Mary Ann, I totally agree. ABSOLUTELY NOT A DUMB QUESTION. My oncs said to stay on H longterm in '99, when I could no longer take Taxotere. I have not gotten any flack from my insur co on this THANK GOD. I have rechecked w/my 5 oncs and they still concur. Let's not try and fix what isn't broken. Dr. Pegram (when he was at UCLA, told me in Feb '06 that as long as I could handle it physically, psychologically and financially -- I should go for it). I do the ECHO annually now, as per Pegram, as he says if I were going to have a problem, it'd have occurred by now. I do ev 6 mnth CT scans, as per my oncs and ev 6 mnth transvaginal pelv sonos (to make sure my ovaries are beautiful, etc.). I do bone density tests ev 2 yrs, just had one and I got "your bones look beautiful". I asked my Boca rock star onc re brain mets. He says if they haven't shown up by now, he's not concerned.

Please read the LONGTERM HERCEPTIN thread from today for more. And please let me know how you fare in your battles re this, ladies! I see it as insulin for a diabetic, keeping the misbehaving gene in line and mets at bay. A totally sane concept. I would not stop taking my bld pressure meds cause I'm in the normal range. We all know it'll go up w/o the meds.

I wish you success. Do not give up. Get an onc that is in agreement w/this plan and who'll stand behind you! I am with you 100%!!!!! Sending you loving energy and prayers for your continued WELLNESS! Keep us all posted on this. It is key to living a long life and seeing our grandchildren married and having babies...
Andi

[Chelee]

It certainly is *not* a dumb question by any means. I know I *wanted* do continue and stay on herceptin past by one yr mark. I fought for it. My onc said no, & my 2nd opinion onc said no. Since the HERA trials had been pushed back they both used that as an excuse. (Sometimes I feel like its about *them* saving money.) JMHO Since I had positive nodes & could NOT have radiation...I thought it was very reasonable to continue on herceptin. I wanted to complete at least two years of it.

My ECHO's were great, so I was disappointed being denied. The long term herceptin patients seem to being doing great on it and most have remained NED...and I have to credit herceptin for it. If something is working...why go off it. To me this is serious business...we aren't just trying to ward off a cold. Joe said the results of the HERA trials are due out in December...I'm looking forward to that.

Chelee

[Brenda_D]

My Onc said I will get it for 1 year.

I also wonder what determines whether you get Herceptin alone or Herceptin with a chemo agent?

[PinkGirl]

I'm not sure how they decide when to start the herceptin. I had 4 treatments of FAC and then 4 Taxol. I started the herceptin with the first taxol. The "A" in FAC is also one that can wreck your heart, so maybe it's not good to have Adria and Herceptin at the same time. Maybe someone else knows about the chemo/herceptin combo.

[Andrea Barnett Budin]

When I had Adria + CMF it was '95, no talk of Her2, etc. When I met in '98 (Vit H was still in clin trials). Then, it was fast-tracked by FDA and made available to all met bc patients as of Sept 28, 1998.

My onc put me on Taxotere, waited 2 mnths for CT scans to be certain it was working. I had some shrinkage, which was good (though I was greedy and wanted MORE) -- and then he added Herceptin. Had ECHOs ev 3 mnths and eventually ev 6 mnths and now annually, as I have been a Vit H girl for so many yrs.

Your point about Adria, which can cause heart issues, along w/H is a good one. I had a muga prior to Adria to *qualify* for its use. Didn't have the question of doing it in conjunction w/H. Sounds scary. Would be interested in hearing an oncs answer to your really good question, Pink Girl.
ANDI

[PinkGirl]

I try to be very positive and hope that my cancer doesn't recur, but I am also a "realist" and know that there is a good chance that it will. From all my reading, I am starting to think of breast cancer as a chronic cancer. That's why I've been thinking about the herceptin. You have been on it, and doing very well, for a long time. I am going to try and corner my onc. sometime and ask him. Herceptin is always described as a therapy for advanced or metastatic BC. Maybe the question should be why do we get it for early stage.

[Andrea Barnett Budin]

I understand being a REALIST, sweet Pink Girl. My darling friend Sue used to back her attitude w/that label. I adored her, and still do, but she did have the most fabulous sense of humor and way of seeing her reality. No anger, no self-pity. That worked for her, along with the love she had with her wonderful husband and for her unmarried Krohn-diseased attorney daughter. Then there was the special love she and I shared that was palpable. Her words are etched into my Soul. When we were too weak to talk we'd write love letters to each other. I saved every one as they made me cry, they touched me so. Her outrage for me, for the indignities I suffered during my chemos, allowed me to simply BE. She took charge of all the anger and bitterness, shielding me from it. She was like a Mother, like a Sister, like a Soulmate. LOVE is deeply healing! I wish each of us the magnificence of knowing such love... My Sue was one of my blessings, to be cherished eternally. In time, I will see her again, and we will rush into one another's arms rapturously...

I also see myself as a *realist*. I am honest w/myself to a point. I never wanted to be protected from the truth of my illness. I needed to know the harsh realities, but I refused to be intimidated by the bad news and poor prognosis. I resisted the notion that it isn't a matter of IF but WHEN ca would recur. I felt I, and the H, and the wisdom of my various oncs, and my supplements, and my husband's loving support could team up and hold the chronic condition in remission.

When I read the stats re my situation, I tossed the bk aside. Dear God. I was doomed, was how it made me feel. My husband likes #s. I gave him the bk, if he wanted, and he did. Because you see, I know I am a living being, not a statistic. I know canser never read a book and has no rule of thumb you can regularly hang your hat on. As you know, every canser is different, every body is different. A hundred different variables counter in and differ from person to person. I know Richard Bloch (of H & R Bloch) had 4th stage lung ca, which is worse, and given mnths to live. Told to put his affairs in order. He declined to accept that. He went on hard chemo for a yr, then opted to continue for another yr, just to be sure he got ev single cell. He meditated, he educated himself, but he used positive mantras and guided imagery and he and his wife Annette fought side by side. 25 yrs later he was still here! I have his bk FIGHTING CANCER which was available free by calling 1 - 800 - 433 - 0464. That was the kind of bk I wanted to read. That and HEALING ESSENCE (Mitchell Gaynor, my NY nutri/onc guru/healer)! (212) 410 - 3820. These were the messages I fed my Soul (or Essence)! And I continue w/bks like the one in the thread about collecting a new bk list...

I do not believe that we must accept our lot passively as predestined. Waiting to be struck yet again. To me, there are several paths we can choose to take that are written in The Book of Life. We have been granted PERSONAL EMPOWERMENT as our intended birthright! We are meant to take the helm of our beingness and make conscious choices. We have the power to heal, instructing our body with our specifically designed thoughts, guiding it to do its job and follow our mind's lead. THE MINDBODY LINK is quite real and astoundingly empowering, I have learned on numerous occasions in my life.

When I have scary, uncertain thoughts, I experience them, as I know stuffing such scenarios and ideas back and down is not healthy. Repressing them is perpetuating the problem, not healing the emotions that are begging to be recognized. But, as soon as I can, I replace the ugly possibilities w/mantras that go like this.

I AM STRONG, BRAVE AND DETERMINED. (It is at the very least my goal.) I AM WOUNDED, BUT I WILL SURVIVE. I AM DEEP IN THE WOODS, BUT I AM NOT LOST. THE STORM WILL NOT TOUCH MY CORE. I WILL NOT LET IT. MY ESSENCE IS CALM AND POISED. MY WILL IS GREAT AND SHALL TRIUMPH. THE WILL TO LIVE IS A MIGHTY FORCE. I WILL BE STEADFAST. I WILL NOT BE DEFEATED IN THIS STRUGGLE. THE TANGIBLE EVIDENCE OF MY FAITH AND MY EFFORTS LIE BEFORE ME. MY INNER VOICE TELLS ME TO TRUST THAT THIS IS SO. MY SPIRIT WILL NOT BE BROKEN. I AM DILIGENTLY STANDING GUARD.

I AM NOT IN COMPLETE CONTROL, AND THAT IS OKAY. LIFE, AND CANSER, OCCUR. WHAT I CAN CONTROL ARE MY THOUGHTS AND HOW I WILL FACE THIS UNWANTED REALITY. WHAT HAS HAPPENED TO ME DOES NOT DEFINE ME. IT IS HOW I REACT THAT WILL TELL WHO I AM. I AM A POSITIVE ENTITY. I WILL NOT ALTER MY BELIEF SYSTEM. I WILL TEACH MY CHILDREN TO FACE ALL ADVERSITY WITH GRACE AND COURAGE. I WILL DO IT FOR MYSELF AND FOR THEM. THIS IS A CHOICE I CAN MAKE. THIS IS THE CHOICE I MUST MAKE. I WILL LEAD THE WAY, DIRECT MY STEPS, MY MANNER AND MY LIFE.

I KNOW CANSER IS NOT THE ENEMY. FEAR IS MY GREATEST FOE. THE RAVAGING EFFECTS OF CHEMOTHERAPY ARE NOT MY ENEMY. THE CHEMICAL DRUGS ARE MY LIFELINE, PULLING ME THROUGH THE ROUGH WATERS. I WILL NOT DROWN. I WILL HOLD MY HEAD HIGH. I BELIEVE IN THE POWERS BESTOWED ON EACH OF US ALONG WITH OUR BIRTH INTO THIS WORLD. FAITH AND FEAR CANNOT OCCUPY THE SAME SPACE.

I WILL KNOW AND ENRICH MY GRANDCHILDREN. (I had none when I was dx in '95. I have lived to welcome and become enchanted by 5 beautiful Souls, the children of my children!) How blessed I feel. I have always known that as terrifying as having 4th stage bc is, as horrid as having a breast amputated from my body is -- it could have been so much worse. I truly have felt LUCKY from the beginning. And I truly have lived with an open heart. I have consequently felt the Light and pure unconditional infinite Universal LOVE fill me up to overflowing. A dazzling experience! I offer love generously to all I encounter, as we are each meant to do. Shyness or defensiveness used to hold me back. Now I hug long and hard and often. I say, I LOVE YOU to people I barely know, yet feel a loving wave come over me impelling me to say what I am thinking. I compliment more often. I judge less. We are all One. Kindred Spirits.

I greet each new day seeing its beauty and its radiance. I KNOW that each day is a gift and I am humbly grateful for the good fortune, daily. I am awed each day with the sacredness of Life.

I feed my mind my philosophy. I HAVE SO MUCH TO LIVE FOR, TO BE GRATEFUL FOR. I AM SO BLESSED! SO VERY LUCKY. I CAN WALK AND TALK, FEED AND BATHE MYSELF. I CAN THINK AND COMMUNICATE WITH OTHERS. THESE SIMPLE BLESSINGS BRING ENORMOUS QUALITY TO MY LIFE AND JOY TO MY WORLD. I SEE THE SUBLIME IN THE ORDINARY ALL AROUND ME. THE DARKNESS WITHIN DISSOLVES AS MY SPIRIT FILLS WITH THE LIGHT.

WHAT ONE PERSON HAS DONE, ANOTHER CAN DO. I CAN DO THIS. IT IS POSSIBLE. I WILL RELAX, BE STILL FROM DEEP WITHIN IN SILENT MEDITATION. I WILL TAKE A LONG, DEEP BREATH IN, HOLD ON TO IT, AND SLOWLY LET IT OUT, ALONG WITH ALL THE UNWANTED EMOTIONS THAT SWIRL ABOUT WITHIN ME. I KNOW THEY ARE POISONOUS TO MY HEALTH. I HAVE MET THEM AND TALKED THEM THROUGH. WRITTEN THEM DOWN AND RELEASED THEM THOROUGHLY. I AM PATIENT THAT IN TIME, THEY WILL LOSE THEIR GRIP ON ME AND I CAN FREELY LET THEM GO. PEACE WILL OVERCOME ME, AS I LIVE WITH THE CERTAINTY AND JOY OF BEING VICTORIOUS. I LIVE AS IF WHAT I AM CALLING TO ME, WHAT I AM PRAYING FOR, IS ALREADY HERE. I CAN FEEL THE ELATION, AND THAT IS WHAT I LIVE WITH. PERSISTENCE IS MY MANTRA. I WILL SURVIVE. I WILL FOCUS ALL MY ENERGY WITH EACH NEW DAY. AND I WILL ENDURE!

I AM IN A PROCESS OF SPIRITUAL UNFOLDING. I MUST REMEMBER, WHEN ALL IS CALM, WE STAGNATE. I AM BECOMING MORE THAN I WAS, AND FOR THIS I AM GRATEFUL. THOUGH THIS WINDSTORM IS THE GREATEST CHALLENGE OF MY LIFE, I WILL STARE IT DOWN. I WILL DO MY VERY BEST. I WILL NOT GIVE IN, NEVER GIVE UP. MY HEART KNOWS THE TRUTH OF MY MY FAITH AND IT WILL GUIDE ME THROUGH. I WILL NOT GIVE MY POWER AWAY TO ANY ONE OR ANY THING. I WILL USE MY POWER OF CONSCIOUS CHOICE TO SEE AND MANIFEST MY DESIRED OUTCOME. WHAT I THINK ALL DAY WILL DETERMINE HOW I WILL FEEL, AND IT WILL SERVE TO PREDICT THE OUTCOME. SO I STAND CLEAR OF FEARFUL MENTAL MEANDERINGS.

I AM NOT BEING TESTED, I AM BEING FORTIFIED. ALL THAT HAS OCCURRED IN MY LIFE WAS MEANT TO BE, TO MAKE ME STRONGER AND MORE COURAGEOUS, SO THAT I WOULD WIN THIS BATTLE FOR MY LIFE. THERE IS A DIVINE PLAN. ALL THAT I SEE IS NOT ALL THAT THERE IS.

I WILL NOT GIVE ONE DAY AWAY TO SADNESS, SORROW, RESENTMENT, ANGER, REMORSE OR THE INABILITY TO FORGIVE THOSE WHO HAVE WOUNDED ME. I WILL REACH DEEP DOWN AND COME UP WITH MORE COMPASSION, MORE KINDNESS AND A GREATER ABILITY TO UNDERSTAND. I AM EVOLVING AND GROWING IN MAGNIFICENT WAYS, AS WE ARE EACH MEANT TO DO.

I MUST BE STRONG FOR THOSE WHO WILL COME AFTER ME AND WITH ME. I WILL MOVE AHEAD WITH MY HEART THOUGH MY HEAD SAYS IT CANNOT BE DONE. I AM HEALING BECAUSE I HAVE CHOSEN TO HEAL, AND WILL NOT ACCEPT LESS. LOVE FILLS MY SOUL. THE MORE I GIVE, THE MORE COMES BACK TO ME. THE POWER TO HEAL *IN ALL WAYS* LIVES DEEP WITHIN ME. I MUST CHOOSE TO TAP INTO IT, NOT TO IGNORE ITS AWESOME FORCE, TO CONTINUALLY CALL UPON IT, TO PUSH FORWARD AND UPWARD, EVERY HOUR OF EVERY DAY. I MUST REMAIN OPEN TO MIRACLES. THEY ARE THERE FOR THE ASKING!

IN ABSOLUTE SILENCE I ALIGN MYSELF WITH MY SOUL. I IDENTIFY MYSELF AS A SOUL, WITH A MIND AND A BODY. I BELIEVE A SOUL IS COMPOSED OF THE ENERGY OF ITS SACRED SOURCE, MAKING EACH OF US LUMINOUS SPIRITUAL BEINGS ON A HUMAN JOURNEY.

I KNOW THAT EVERY THOUGHT HAS THE POWER OF A PRAYER. AND THAT EVERY PRAYER IS A POTENTIAL MIRACLE...

Andi

[PinkGirl]

How about "it's okay to hope for the best but be prepared for the worst"?

[Sheila]

Pink Girl
I can understand your question....back when I was diagnosed, I was stage 1 so I could not receive Herceptin (5 1/2 years ago, it was only given to "metastatic" BC patients, or after a recurrence.)
So, 1 1/2 years after I was diagnosed, I DID have a recurrence...and then was eligile for Herceptin, and have been on it ever since...it would make sense to me that it would depend on the stage at diagnosis....if I was anything but a Stage 0 or 1, I would want to get it indefinately, and I would fight for it!
You are correct that Herceptin is NEVER given with Adriamycin....Adriamycin can cause heart problems, and people who have Adriamycin chemo prior to Herceptin, seem to be at higher risk for cardiac issues, and need to watched more closely..

[Andrea Barnett Budin]

Pinkie -- I suppose that's what staying on Vit H translates to... Helping to ward off the worst.

Yet when I have my INSCANITY moments, I try to override it w/this is just another test to verify that I am still in remission vs WHAT IF, HAS MY LUCKY STREAK RUN OUT. I don't give those thoughts my energy, tempting though they are at the moment!

Then, after hearing, and reading STABLE, NEMD -- I feel like I just signed a contract for another 6 mnths of WELLNESS. I have it in writing. Crazy inscanity. After all these yrs, still need SAME DAY REPORT. Can't breathe till I hear STABLE...
Andi

[Barbara2]

I tried sending this last night and it didn't go through. I'll tryagain. This is what Dr. Pegram said to me when I asked him about taking more than a year of Herceptin:

Is there any thought about the possibility of “maintenance” Herceptin after, let’s say 5 years of NED early stage breast cancer, to keep the cancer from returning?
No. One year should be enough. Now the issue is whether you need actually a whole year or not. There is some evidence that you may need as little as 9 weeks even, instead of a whole year. It was a small study. So now they’re doing 6 months vs. 12 months; if that shows no difference ultimately (which will take another few years to get those results) then people will start looking at like three months. But probably a year is plenty. That’s why I don’t recommend any more.

[Joanne S]

see http://www.her2support.org/vbulletin...33168#poststop

[Sherryg683]

I think a big part of it not being given longer than a year for early stage breast cancer is insurance. Herceptin is not cheap. The doctors are not sure of the benefits of giving it longer than a year and this for sure will cause the insurance companies to say NO to anything longer. I was diagnosed Stage IV and have been taking it weekly now for almost 2 years and will continue indefinately. I have had no problems with insurance. I remain NED for almost 2 years now, I feel the Herceptin must be doing its job for me. ...sherryg

[Andrea Barnett Budin]

Barbara, I think it fabulous that you are doing so well. Stay NED.

I just wanted to add an interesting caveat here. I saw Pegram in Feb '06. Perhaps because of my feeling that Herceptin is like insulin for a diabetic, and I would feel most uncomfortable having it taken away, here is his response to my question to him re staying on H. (I also read an interview I googled from some Med Journal that stated the same thing.)

As long as you can psychologically, physically and financially afford to remain on H -- that is what I think you should do. Paul was w/me and we both heard this loud and clear, as I was considering stopping. Tempting though it is, I am sticking w/the program. I have not had a met since being on it (in '98). Have been on Vit H ever since, NED. Something to consider. I guess it's a personal choice to a large degree. I also checked w/3 other oncs on this and this concurred -- if it isn't broken, don't fix it...
Andi

[new shoes]

How very timely! My onc stopped by my chair this morning while I was getting H. He just stopped to say "hi", but I pegged him again about HIS decision that I receive only 1 year of treatment. He pointed out again that there was nothing new in the literature that suggested that more than one year was beneficial. I suggested that the presentations in San Antonio in Dec. might recommend otherwise. His response "Then we will dicuss it again in Dec." If he thinks I'm dropping this until then he really doesn't know me well.

I haven't even looked into weather my insurance will pay for it after the first year. But, I have a feeling that if my onc doesn't approve it I'll have a real battle on my hands.

[Barbara2]

Please note that my question to Dr. Pegram was regarding length of herceptin use for early stage NED, in other words for those who have not yet had mets. For patients with mets, herceptin and how it is used is a different issue. Hope that helps to clarify...

[Donna]

Hi Amazing Group,

I only received 7 months of Herceptin and was taken off for LVEF issues. I met with my oncologist last week to see about continuing now that my LVEF is bouncing back to 61. We decided to leave it here, no more herceptin based on:
1 - the FinHer study
2 - the HERA study was done with women who had completed standard chemo and then Herceptin was given long after chemo ended, not concurrently
3 - she indicated that the completion of the HERA study coming out this December is going to concur that a shorter regimen works - she is really cutting edge when it comes to being well versed in all the studies going on out there
4 - when I asked if I had a shot at having no recurrences she gave me a resounding yes! saying that my regimen ACT+H hit the cancer at the genetic level

I am ER 99%+ PR 10%+ and Her-2Neu 3+ - Stage II-B.

I may have some of this wrong but it is the best explanation for what I understand. I think for Herceptin More may not always be Better - it depends on the specific situation - which hopefully our oncologists figure out and recommend for us.

My biggest fear is that someday soon it will be the insurance company figuring out our regimens based on averages instead of our oncologists based on the individual.

I am banking my life on having had enough Herceptin - but we did also discuss what the next step would be should there be a recurrence.

But ultimately - who the heck knows?????????????

Best to you all,

Donna

[Margerie]

On the issue of concurrent vs. sequential treamtent and the HERA trial- I found this today when I was looking for some 3 week vs 1 week dose study for another thread. I did not sleep last night, so maybe someone with more brain power can decipher- but it looks like they are comparing both?

http://www.pharmac.govt.nz/pdf/290607d.pdf