Herceptin or not, that is the question!

[Joannie]

Hi all:
Well, I'm visiting my onc. tomorrow for a check-up. I'm 2 1/2 yrs. NED. Finished chemo 8/03. I was Her2 3+, one node, double mastectomy. Like many of you, trying to figure out what to do in this situation where we just missed the "boat" with Herceptin. I had 4 rounds of AC and four rounds of Taxol. Dose Dense treatment. I have received opinions from three oncologists and also wrote two well known onc. (Dr. Slege and Dr. Tripathy). All but 1 didn't recommend that I take Herceptin this far out from chemo being completed. I need to (again) have this conversation with my onc. tomorrow and I guess my gut tells me to do it, but I'm afraid to go against so many opinions of not doing it! I know no one really has the answer of whether it will help or not. I wish it were more black and white. I read postings on this board daily and have received so much wonderful information. I know many of you face this very situation. What has helped you to make the decision to take Herceptin or not take it? Any input would be helpful. I guess I'm just trying to be sure about what to do, if that is even possible.
I appreciate the time and concern each one of you provide with all the your life experiences. It not only makes me feel like I'm not losing my mind, but that I have so much support from women who know deep down in their gut what I'm going through.
Thank you for your time.
Joannie

[PatS]

Hi Joannie - I understand your dilemma completely. I emailed a few well known oncs and no one says they believe I should do the herceptin. Everyone says no scientific evidence to prove etc. etc. etc. One dr. did say "I think your intuition is telling you to go for it and I would trust it. The more we know about Herceptin I think we realize it should be used - the earlier the better! I'd just be sure your heart is still in good working order (the cardiac side effects are the only downside from Herceptin) and go for it! It feels to be that you will only spend the next several years worrying about it and etc, etc. if you didn't." but she's a breast surgeon who has a lot of bc patients not an onc. I'm like you I think my gut says do it but so many experts say no! It's hard to go against that. My onc says she will give it to me if I want it but says she wouldn't do it if she were me. No one will understand my going back into treatment after so long against the advise of my onc, and I know this shouldn't effect my decision but it's hard not to consider that. I've had this going around in my head so much I don't know what to do....too much going on and too many big decisions lately, but I've got to decide soon. I'm sorry I'm no help but you're not alone in your dilemma.

Pat

[chrislmelb]

Joannie, i am to receive my first dose of Herceptin on Monday after finishing my chemo May 04. I know that they don't know the answer yet if it will really help me, but as i have a 6 yo daughter (and a husband who can't look after himself, let alone her) i am going to give it a go to try to be around as long as possible. i am getting it after being on the control arm of the HERA trial so at least my results can be useful.

Here's hoping
Christine

[CLTann]

I am stage 1, 1.5 cm, invasive ductal carcinoma, pr, er, Her2 all positive, postmenopause, nodes clean, mastec 9/05, clean margin. I opted for no chemo and no radiation. I asked for Herceptin along with arimidex. I talked to two oncs. Both of them agreed that I can have Herceptin, although they don't have data to back up this regimen. From what I read about Herceptin, it should couple with stray cancer cells and cause them to die. I really see no reason for the inclusion of chemo agents in the scheme. The oncs said that chemo has a synergistic effect, making Herceptin working better. It is only because all the reported results were done with chemo agents so far. Anyway, in my case, I will go for Herceptin without chemo. Of course, they will monitor the heart function during treatment.

Hope this bit of info will add to your gut feeling.

Love and hug.

[Valerie]

Hi all,
I am scheduled for my MUGA and herceptin ed. class on Tuesday. When I went to see my onc. in August, she said that if I had been coming through this year I would have been put on herceptin after my 4 A/C. I also had radiation. It took me 2 1/2 months to think about whether to go for the herceptin, a year long commitment, port and possible side effects etc. I was diagnosed at 49 and had a 4mm invasive tumor that was her2 +, er weak +/ pr indeterminate and node negative. I also had oncotype dx which suggested a higher than average recurrence which is what led to the decision to do chemo. I had been really enjoying seeing my onc on just a 6 month basis to drop in and chat. However, I know that if I came in 6 months from now with mets I would be on herceptin. So I decided to do the prophylactic thing and do herceptin for 1 year. A big decision for everyone and difficult since there are no studies to support this for people like us. My fiance said by the time I finish the first year there will be more evidence as to whether it is better to go for two years. I guess my feeling is that herceptin will help to some degree whenever it is given. It helps people with metastatic disease and now it is shown to help prevent recurrence. How ironic too, in the last few months I was really starting to feel great, starting to walk/run, swim and ride my horse with enthusiasm rather than forcing myself. I understand though that herceptin is not as bad as chemo. yeah! Also I am post menopause, ovaries gone due to cysts and on Femara.
Love to all, Valerie

[Barbara2]

Hi, Joannie, I finished my chemo about 6 months before you did. Strongly Her2+, 1 node+, stage 2b, double mastectomy. Never did have Herceptin as part of the first treatment (6 CEF), but started it 2 years and 2 months after my last treatment.

In hindsight, I know that the treatment I received does not appear to fare as well as the TAC. I wanted to do something to help give my system a boost in fighting stray cells, so I opted to go with the herceptin for 1 year, which I started this past May. It is going well and I have no regrets. And yes, herceptin is a breath of fresh air in comparison to chemo. Some people do have some side affects, and I have, too, but they seem to be much smaller in magnitude than the chemo concerns.

I remember someone posting here several months ago, who said she had asked 4 "experts" in the field, what their opinion was of receiving late herceptin, and should it be combined with Taxol. As I recall, this is what she found out: Dr. #1 said he wouldn't recommend any further treatment. Dr. #2 and #3 recommended Herceptin only, and Dr. #4 recommended Herceptin and Taxol.

So that really cleared things up, didn't it!! Who knows how much it will help us when there are no trials or tests that can show benefits or no benefits? No one, as of now. I chose Herceptin so as not to live with the "what if's," should it return.

In prayer, I ask for guidance in making these tough choices. Knowing that the Lord will be there through thick and thin, helps to bring about confidence in the choices I make.

Blessings to you,
Barbara

Hi Joannie,

Your question is a hard one to answer. I believe that there are studies concluding that it appeared that Herceptin with chemo was more effective but I did my research four months ago when Herceptin was just coming out and was cut short in the phase 3 studies due to the positive results. I have heard, from my sister-in-law who has had bc for three years now, that a number of people she knows have had serious side effects from the Herceptin. She also knows the inventer and has not taken Herceptin herself until a month ago. However, we are planning on taking it when we finish the effects of the AC treatments (had the last of 4 this past Thursday). The plan is to take it with Taxotere. Next treatment in three weeks will be Taxotere only then the following treatment will be Taxotere with Herceptin. Our case is a little different. We were 6 cm, 2 nodes with 1.5 cm tumors and strong ER/PR and HER-2. Also we had a nottingham scale of 8 out of 9, which isn't good. The Tumor went from 2.5 cm in late June to 6 cm in late July when we removed it via surgery, and mast on one side. Even under our conditions we had a 50% chance that we got it all and chemo wouldn't be necessary. However, we had a 50% chance we didn't get it all so we opted for agressive chemo.

Only you can make the call but if it has been a couple of years and you are still negative, that is a great positive. You may want to look at your old path report and determing your nottingham scale. If it is low then you may be in a saver position than you realize. The original size of your tumor matters also. Since it is not an exact science it is a matter of odds. If it was under 1.5 cm and low on the nottingham scale then chances are about the same that if you took Herceptin then it it would benefit you since you had undetectable cancer versus having serious side effects. Guessing about 2% for benefit and, not guessing, 2 to 5% for adverse effects. First number in the side effects are the percentage of patients with the side effects when taking Herceptin alone. Out of the 7% with heart failure, 5% was serious. I can see why they are recommending you to not take it. However, if you are one of the 2% it would help in your condition, then it would be a great thing. 2% based on a stage 1 tumor with no spread, 5 year reoccurance rate. Its all odds and maybe your gut feelings are telling you where you fall in these numbers.


Adverse Events Occurring in > 5% of Patients or at Increased Incidence in the HERCEPTIN Arm of the Randomized Study
(Percent of Patients)

Single Agent n = 352 HERCEPTIN + Paclitaxel
n = 91 Paclitaxel Alone
n = 95 HERCEPTIN + AC
n = 143 AC Alone
n = 135
Body as a Whole Pain 47 61 62 57 42
Asthenia 42 62 57 54 55
Fever 36 49 23 56 34
Chills 32 41 4 35 11
Headache 26 36 28 44 31
Abdominal pain 22 34 22 23 18
Back pain 22 34 30 27 15
Infection 20 47 27 47 31
Flu syndrome 10 12 5 12 6
Accidental injury 6 13 3 9 4
Allergic reaction 3 8 2 4 2
********Cardiovascular Tachycardia 5 12 4 10 5
********Congestive heart failure 7 11 1 28 7
Digestive Nausea 33 51 9 76 77
Diarrhea 25 45 29 45 26
Vomiting 23 37 28 53 49
Nausea and vomiting 8 14 11 18 9
Anorexia 14 24 16 31 26
Heme & Lymphatic Anemia 4 14 9 36 26
Leukopenia 3 24 17 52 34
Metabolic Peripheral edema 10 22 20 20 17
Edema 8 10 8 11 5
Musculoskeletal Bone pain 7 24 18 7 7
Arthralgia 6 37 21 8 9
Nervous Insomnia 14 25 13 29 15
Dizziness 13 22 24 24 18
Paresthesia 9 48 39 17 11
Depression 6 12 13 20 12
Peripheral neuritis 2 23 16 2 2
Neuropathy 1 13 5 4 4
Respiratory Cough increased 26 41 22 43 29
Dyspnea 22 27 26 42 25
Rhinitis 14 22 5 22 16
Pharyngitis 12 22 14 30 18
Sinusitis 9 21 7 13 6
Skin Rash 18 38 18 27 17
Herpes simplex 2 12 3 7 9
Acne 2 11 3 3 < 1
Urogenital Urinary tract infection 5 18 14 13 7

Back to our case we are betting on a 30% chance of benefit vs a 5% chance of serious side effects (based on Genetechs own warnings) for taking Herceptin alone. We are going with those odds but it is still a gamble. We could be in the 50% class that have already beat the cancer or in the 5% group that will be seriously affected by Herceptin. It is still a great drug but being two years out increases your odd of already having success.

BUT, only you know if it is worth it.

Good luck and either way you decide, it will be the correct decision!!!

Shaeff

[Lyn]

Hi there, look at it this way, if you take the Herceptin you will feel like you belong to the rest of the family on this site. If it is on offer, take it, like any drug, even over the counter types there is the possible side effects, my onc was terrified of this drug and I had to convince him it was ok, I have been on it for four years now and my visit last month, he told me it was a miracle I was still alive, I have to get my drug combos off this site because it is all new to him. I have been through heart failure in three valves, not related to these drugs at all by thyroid and my LV and heart are in great condition now. If you gut says go for it, listen to it, if it wasn't for my inner voices I would not have found my lump in the first place. Hope this helps.

Love & Hugs Lyn

[StephN]

Some of you have read my posts before on this subject. I say take the Herceptin as it could save you a lot of trouble down the road.
Some of you are a couple of years out from initial treatment and are still not feeling confident that your disease is under control. And with good reason - this cancer is VERY SNEAKY!
I was feeling GREAT just three months after finishing my adjuvent chemos and radiation. Little did I suspect that the disease was going rampant in my liver. This was at the end of 2001 and before I could get my insurance to pay for herceptin. But come Jan. 2002 I was on Herceptin with Taxol and Navelbine. All this worked for me but I am one of only a FEW. Most of the other women in my clinical trial of that time are no longer with us. Her2 positive mets are normally classed as "hard-to-treat" and if you can give yourself a higher chance of NO disease progression - do not hesitate.

You gals who are newer to this disease see many posts here from women who are constantly changing chemos and combos to get their mets to subside. It is not a pleasant battle and the vast majority (if any) of us never had the opportunity to have the adjuvent Herceptin.

So, go ahead - help write a new chapter and new stats for survival. Remember that many of the stats that are quoted are OLD and from patients who were worse off than you are. If you are healthy, your heart should not be affected. I am 56 and taking Herceptin for 4 years now. My heart and general physical condition was harmed much more from all the chemos I took than Herceptin.

[Lolly]

As usual, Steph is right on with her advice. You don't want to be in our shoes if you can help it, and Herceptin is your lifeline. Grab it!

<3, Lolly

[nancymarie]

Joannie,

What did you decide on?

I am HER2/NEU 3+ also, and was in the clinical trial for herceptin but got put in the control arm that did not receive herceptin. My last chemo was March 2003.

I am going to talk to my onc today about getting on Herceptin. When I first was diagnosed, my breast surgeon told me about how wonderful herceptin was and I was anxious to receive it back then and was devastated when I could not. I met with her recently too and she told me that if my current onc did not feel that I should go on herceptin, to get a 2nd opinion from other oncs in my area.

-Nancy

[Joannie]

Hi Ladies:
I had to move my onc. appt to next week, therefore, I have not spoken with her yet about taking Herceptin. I am leaning toward taking the drug at this point not only for piece of mind but I don't want to have any regrets!

Thank you for all of your posts and I will let you know what happens next week.
Joannie

[CLTann]

As I got prepared for getting Herceptin (without chemo), my onc at the last minute said that he could not recommend that. There are no data to back up this regimen, with HER2 +++, Pr+,ER+, 1 cm, node free, postmenopause, no spread, grade 1/2, using only herceptin and arimidex. So I will have only arimidex. The chance of no recurrence is about 85%. The Herceptin/chemo will increase this chance to 90%. For the 5% gain, there is a 5% chance of heart problem. I will take other supplements to enhance my chance. In a way, I am glad that I don't need to go through the infusion process. I hope I have made the right decision.

[nancymarie]

I saw my onc yesterday and we talked about Herceptin. He gave me the same story line about how Herceptin has not been tested with those who had chemo years ago but after hearing me say that I wanted to do everything possible at this point to not get a recurrance, he approved it! Yeah!!!

So, we are waiting to see if Pacificare will cover this - and I should know by early next week.

Hugs,

-Nancy

HER2/NEU 3+, IDC, Stage IIB, ER/PR-
Mastectomy (right) - was on 9/11/2002, 3.5 cm tumor
AC/Taxotere
Radiation
Prophylactic Mastectomy on 3/30/2004 with lat flap reconstruction/implants
Original implants swapped out on 6/28/2005 for the cohesive gels

[Gina]

CLT ANN writes: "From what I read about Herceptin, it should couple with stray cancer cells and cause them to die. I really see no reason for the inclusion of chemo agents in the scheme. The oncs said that chemo has a synergistic effect, making Herceptin working better. It is only because all the reported results were done with chemo agents so far. Anyway, in my case, I will go for Herceptin without chemo."

Yes, YES, YES...what most people STILL don't understand is the tremendous power of using HERCEPTIN alone...at the right dose and frequency of course--this is the way I have always taken it...not having any toxic chemo since 1998--using only herceptin alone with excellent results and high QOL and very little damage to my bio-chem or to my person, as herceptin alone is not very damaging to anything but cells over-expressing her-2 receptors. Though it does not exactly "cause them to die" --it does tag or MARK them for destruction by our own immune systems...at least that is one popular view of how it may work that I find the most plausible...anyhow...

There have actually been A FEW limited studies..not widely published so far (most likely as not to ruffle feathers of the more toxic chemo industry)...that clearly show that the HERCEPTIN can actually be MORE effective when used ALONE than when taken with chemo...in fact, many of the early studies "CLAIMING" that herceptin taken with chemo was more effective have now been found to have been fatally flawed. This was primarily due in the beginning to non-her-2 patients being included in the studies...here is what happened. In the studies with herceptin and chemo...the herceptin caused improvement in a considerable number of folks who turned out to actually be her-2 positive while the chemo actually hit a few of the others who were not her-2 positive--causing a larger pool of respondents. On the other arm...the herceptin ONLY arm...the Herceptin merely "appeared" to do worse as it ONLY hit the folks who were her-2 positive and did nothing to help the folks who were her-2 negative...which falsely gave the idea to everyone that "HERCEPTIN plus chemo" was better--which is certainly NOT always (if EVER) the case. But unfortunately...for whatever reasons, these early studies..."stuck" in every one's mind...sort of like a popular myth. Later studies, using herceptin ALONE with all her-2 positive patients...actually in some instances out-performed the other arms that coupled Herceptin with various chemo-toxic agents...no need to take my word for...google the studies your self...and you will see which chemo -combos were out-performed by Herceptin alone and I am not joking....unfortunately, many of these less that ideal chemo combo cocktails are being given to us still...many to folks on this site...sighhh.

That said, getting back to modern day Hamlet question of "To Herceptin or to not Herceptin"... I would encourage us ALL instead "NOT TO GUESS" ...in this day of high-tech biotech and advances in all kinds of testing, there is NO need to wonder if you have active her-2 and need to do something about it or if it is NOT active, why put yourself through all the agony?? Trust me, as GREAT as HERCEPTIN is...I would not be taking it unless I knew for certain THAT I ABSOLUTELY HAD NO OTHER CHOICE and unfortunately, in my case with liver, pelvic and bone mets on occasion, I have no real option at this time but to keep taking it, regularly on a schedule and at a dosage that is RIGHT for me.

I know the tumor markers are controversial to many and are certainly not full-proof...but let's cut to the chase...think about what being positive for her-2 really means at the cellular level...there is NO medical mystery here. If you are positive for her-2 and are actively over-expressing the her-2 protein, it will be in your bloodstream...plain as day..there is NO missing it...it is measurable...you can find out with a simple $126 blood test called the serial serum her-2 test ...for more info, see the blood test section on this site. Measure the number consistently over TIME..key point..and see what it is doing...if it is see-sawing back and forth between 5 and 10...not to worry...if it starts creeping up, uP, UP...become concerned but do not jump to too many horrible conclusions...look at your WHOLE bloodwork picture. What is your CA 27/29 doing..is it see-sawing back and forth between oh..say 3 and 13.??? If so, probably no big deal..is it consistently higher than 13, 14, 15, is it going higher and higher??? 22, 27, 35, 40, 70-- GET worried... Now, look at your CBC...look at it CAREFULLY...are your grans/neutrophils over 70...or steadily creeping up, up, uP into the 80's...are your lymphs dropping...less than 30, then, less than 20..once in the teens..big problems could be mounting. What about your platelets..less than 300??? take more magnesium tonight and call me in the morning...smile..Now, look at your chemistries...how HIGH is your GGT??? over 90 you've got trouble in your back yard...look at your liver enzymes along with your ALK PHOS...all going up, uP UP, and away...welcome to my world...you have active disease, probably in the liver..bones..or both, or worse. Chart this data yourself and take it to an onc who specializes in Her-2 mediated disease and get on a steady regimen of Herceptin right away if you need it...do not pass go...do not stop to "phone a friend"..smile...just get to the Herceptin as fast as you can. On the contrary..if you follow all these things and are scanned regularly and all seems well...your numbers are well in the middle to lower end of their ranges...your CBC and Chemistries are BEAUTIFUL, your scans are clean, ...you are eating well, walking well, sleeping well, LIVING well, FEELING WELL..pat yourself on the back and be happy..but NEVER become complacent. I have lived through so MANY remissions from this illness (7)...only to be brought quickly back to reality again and again to the same mud hole...do not follow my example, when I first had it -- we didn't know much about Herceptin or how to use it and I would take myself off of it for a year at time..only to fall prey to the illness again and again..eventually learned my lesson, hard-headed as I am..smile..but today, we can no longer hide behind "the mystery that is less and less of an enigma and more and more about just doing GOOD basic research" . This is NOT rocket science folks...educate yourselves and become your own best advocates, stay on top of your own case histories...keep binders with all your blood results handy so you can match and compare numbers at a glance, read this web-site frequently for lots of real information and you will learn to get better and better at being Her-2 positive...whatever that means for you...which in many cases..will be something different from what it means for other folks...yes, it is true, lots of folks who are her-2 positive eventually experience mets...but not every body will. And now, what used to be a sure death sentence, is becoming more and more like just a chronic disease. Think of yourselves as being simply "canceretic" and follow the diabetic model...use your tumor markers similarly to the way folks with diabetes monitor their blood sugar and use as MUCH or as LITTLE of herceptin as is needed to keep you blissfully and completely NED...Whatever you do, don't let it get out of control, if at all possible...as I say..do NOT follow my poor example of allowing myself to mets 7 times..sighh..(but hey, I learned a lot..smile smile) and sighh,

Last, but not least, remember it is your body and your life. Be your own best advocate. Be your own BIGGEST fan...smile...and count me in as your second biggest fan because we all are heroines and heros, every last one of us. Not just any soul could survive what we all have, but look around this board...we are all still here. Be proud of who you are and what you represent...which is HOPE to all present and living with this disease here and now and as positive role models for all those who come after until we finally get to the root cause of what is causing the her-2 to over-express in the first place and learn how to make the nightmare stop once and for all.

Godspeed to us all,
Gina
Gina@Comcast.net
Original DX in 1997; STAGE IV mets in 1999; 6 years and 7 months experience with Herceptin; This month marks my 8th year since mastectomy and I am STILL here...smile.

[Her2neu-bie]

Gina, you are scaring the crap outta me! Arrghhh!! No, really, just giving me material for thought..... Can you post the links for these studies? I'm also curious as to how you came up with the numbers (counts)? Where is the blood test section that you refer to? I looked around but didn't find it.

I've been agonizing over this and just a week ago decided to put it "on the back burner" as I was having too hard of a time making the decision. I originally was told that I was HER2- but since I moved I have a new onc. and she tested my tumor (was banked) and it came back as HER2+. The lab results say that the "ratio of HER-2 to DEP-17 is greater than 4.0).

A little history: Dx'd 8/02, lumpectomy with ax node dissection, 19/41 nodes positive, ER/PR+, FEC X6, 7 1/2 weeks rads, oophorectomy, arimidex. Right now I am as you say, feeling well, enjoying like, etc. Part of my decision to "shelve it" is that I don't want to rock the boat.

Linda R.

Editing here: My CA 27.29 has always been in the teen, was 18 10/3/05. CA 15.3 was 13.5 same time.

[AlaskaAngel]

Gina, CLT Ann, HER-2-new-bie...

As an early stage HercepTest Her2+++ in 2002 and still NED who got caught in the pool of people who are prevented from proving Herceptin is useful for people like me, so far the general field of oncologists are content to label those like me as not needing Herceptin when they haven't proven that we don't. They freely admit they do not yet have long-term reliable statistics for HER2+++ patients, and they are recommending Herceptin for anyone with my cancer characteristics who is newly diagnosed.

Do I really want to take the chance that in the end, enough of those people in my situation will prove that the oncologists "guessed" right about us, or would I rather do what I can to get Herceptin now?

I'm not a pessimist but given that they are supporting the use of Herceptin in the newly diagnosed who have my cancer characteristics, that 5% chance looks pretty good to me even if it is a hassle to do more treatment.

AlaskaAngel

[Gina]

Hi, Linda R..did not mean to scare you so...but I wish when I finished all my treatment the FIRST time back in '98 and they declared me "cured"--my Ca 27/29 numbers were "normal" my scans were crystal CLEAN--THAT someone, anyone would have alerted me to THE odyssey I would begin to face --completely unprepared...and talk about being a NEWBIE..smile..--only 5 months later when the cancer came back right before the radiologists very eyes first in my liver with lesions as big as "quarters, nickles, and dimes" right and left lobes, inoperable...blah blah blah...The same radiologist had just seen my liver CT in November of '98 and pronounced it crystal clean...yet, by Spring of '99, there I was...literally dying...I had endured an entire year of surgeries, biopsies, heavy dose aggressive chemos...radiation..and for what??? 5 frickin months??!!!!!...I was SO ANGRY...yes..I wish someone had thought to take a minute to share with me such a dark and terrible her-2 truth..I wouldn't have liked hearing it and knowing hard-headed me..I may have not even heeded their warnings...but at that time...there was no one...we simply JUST DIDN't know. In fact, when I finished my cut/slash/chemo/burn treatments in the fall of '98, Herceptin was not even an option...not even approved by the FDA until later that November... So that is why I jump up and down and scream and yell and irritate some folks sometimes...as I believe that when one has her-2, it is better to be for-warned and thus, somewhat "prepared". Any how...the tumor marker comparison numbers I list above you will NOT find in any study as my studies were done with comparing the markers in my own blood over the course of many years using and not using herceptin and testing many things against her-2 as a private citizen. I am not a doctor or a scientist..just a gal with her-2 who wants to try to fight back the best way she knows how.

Anyway, a lot of articles I have saved through the years are in a paper / hard copy format...remember...a lot of this not only pre-dates herceptin but the uh DIGITAL world...smile...and I don't have access right now to a scanner so I must dig for the studies if time permits as many want and should see them and actually take them in to their oncologists... but if you go online and google long and hard enough...drill down deep, you too can find them. They do exist. Think about it...somebody - somewhere would have had to test HERCEPTIN ALONE..if only in some capacity as a CONTROL...at the very least..THERE has to be data ..smile...think about it....but like I said..I believe there are OTHER REASONS...that these studies are not made more visibile...BIG PHARMA needs everyone to play nicely in the sand box..but that is just MY PERSONAL view and in no way reflects the view of any other part of this site. All the numbers I gave you are just RULE of THUMB..there is no oncologist or researcher anywhere in the world, I guess, who can corroborate my findings at this time..but these values where what I discovered during years of testing both mine and others markers with the Herceptin..without the Herceptin..with the Herceptin coupled with other non-toxic agents..etc. I figured if I were dying anyway..I might as well leave a HUGE paper trail of my demise...and huge it is..comprising at this time some 8 3-ring binders of pure raw data--that has scarcely been analysed...but enough said.

Thank you for giving me your CA 27/29 tumor marker values...and especially the CA 15-3. I am NO doctor, but actually, in truth, they look pretty darn good to me..., but do not grow complacent...watch those numbers like a hawk...if you do choose to put the "to take or not to take herceptin" issue on the back burner--when I look into my crystal ball..smile...I really don't see you checking out due to Her-2 any time soon, but remember, the numbers are not 100 percent accurate for EVERYONE...and unfortunately, there is some hidden aspect of this disease that somehow can leave us vulnerable to its rearing its ugly head when we least expect it or have time to deal with it (again) in our lives. I personally have watched my own numbers LEAP from months of being normal into the hundreds in only a couple of months...very scary..very painful...so you must BE CAREFUL!!!! Please believe me when I say that my heart is in the right place...I feel SO BAD for you girls hanging out there in limbo and am just trying to give you folks in that horrible "NO MAN's LAND area of early stager her-2" the best guide I can--using the only tool I have and that is my own personal experience wrestling with this illness on my own--8 years is a long time in one way, but granted..it is NOT very much..as none of my ideas are proven..it is NOT probably scientific enough..but it is something you can at least TAKE into consideration along with as many other variables as you can find when making the final decision. Of course, I could easily make the other argument that if the Herceptin is available to you now, TAKE IT as some studies are showing that taking the extra year may be MORE like a cure in the long run or at least take you 3 years further out...although I think all that is still controversial...as I work with folks who took similar regimens followed by a year of Herceptin 4 years back and guess what?? some have relapsed...4 years out..so it is still too soon to say "cure"..and in truth..if you follow a few tips from this site on taking herceptin correctly --it is not that toxic..I don't even have or use a port...I have a great quality of life on Herceptin alone...you can too, if that is what you decide to do or you can wait until it is clear that you are going to need it--meaning those CA 15-3 and 27/29 numbers start creeping up UP UP/you start feeling something ouchie...or your scans pick up something...but by then, most likely you will be as I now am in a mets situation...FINAL WORD: It is probably better to prevent than to be forced to treat..but it is--your call. As I ALWAYS remind each of us..it is YOUR BODY and YOUR LIFE...Godspeed to us all and goodnight, Gina L. Popp

[margaret]

Gina,

Thank you so much for sharing all your experience and knowledge. It's extremely helpful and encouraging. It's so valuable to have your 'first hand' account with how you've dealt with your mets. You sound very intelligent and strong and I wanted to thank you for sharing such valuable info with us.
Thanks,
Margaret

[shulland]

Hi, I have just joined today. Chemo AC+T 6 months ago.Mastectomy of r breast. Just received news last week that cancer was Her2/3+.Am going to have a go with Herceptin even though oncologist says there is no scientific proof. It will cost me $70,000. Is there another way for me to receive this treatment?