HER2+

barbicorn, f you decide too only go alternative, you might want to do a little more google research on alternative medicine. It's a gamble no matter what you do. If you are stage 2A, I'm not sure, but believe someone said 54% chance with surgery alone you won't have a recurrence.

I'm curious to why you are choosing not to do anything? What about surgery?

Barbiecorn, When you say "for recurrence purposes only," what does that mean?   Isn't that why pretty much everyone does chemo?  To kill the cells that the MRI/PET can't pick up?

I did not require Herceptin but I'm a bit of a research junkie so I've been looking around for studies for you that show the 50% effectiveness of Herceptin.  There are some short-term studies but the problem, as Susie pointed out, is that it's difficult to recruit and keep women in the "No Herceptin" arm of any trial for any length of time, as the following study found out:

Herceptin Treatment Lowers Recurrence Rate In Early Breast Cancer  One group of 1,694 patients received Herceptin every three weeks for one year; another 1,694 received it for two years. No Herceptin was administered to the third group of 1,693 patients. There were 220 recurrences in the group that did not receive Herceptin, compared with 127 in the group treated for one year with Herceptin. The group receiving the drug had a significant improvement in disease-free survival of 8.4 percent at two years.

http://www.sciencedaily.com/releases/2005/10/051022234245.htm  This result is from 2005 and the study was supposed to run until 2008 so I dug around for any follow-up results covering this longer period of time. I did find an article that talked about the 4 year follow-up results.  These results were less favorable, but that's because more than half of the women in the "No Herceptin" group switched into the "Herceptin" good, in effect invalidating the rest of the trial. 

Two other studies: 

Trastuzumab plus Adjuvant Chemotherapy for Operable HER2-Positive Breast Cancer The median follow-up was 2.0 years (2.4 years in trial B-31 and 1.5 years in trial N9831). There were 261 events in the control group and 133 events in the trastuzumab group.... The percentages of patients alive and disease-free at three years were 75.4 percent in the control group and 87.1 percent in the trastuzumab group (absolute difference, 11.8 percentage points; 95 percent confidence interval, 8.1 to 15.4 percentage points). At four years, the respective percentages were 67.1 percent and 85.3 percent (absolute difference, 18.2 percentage points; 95 percent confidence interval, 12.7 to 23.7 percentage points).
There were 62 deaths in the trastuzumab group, as compared with 92 deaths in the control group (hazard ratio, 0.67; 95 percent confidence interval, 0.48 to 0.93; P=0.015). The absolute survival rate at three years was 94.3 percent in the trastuzumab group and 91.7 percent in the control group (absolute difference, 2.5 percentage points; 95 percent confidence interval, 0.1 to 5.0 percentage points); at four years, the respective rates were 86.6 percent and 91.4 percent (absolute difference, 4.8 percentage points; 95 percent confidence interval, 0.6 to 9.0 percentage points).
Distant metastases were reported in 193 patients in the control group and 96 in the trastuzumab group. The hazard ratio for a first distant recurrence was 0.47 in the trastuzumab group as compared with the control group (95 percent confidence interval, 0.37 to 0.61; P <0.0001) At three years, 90.4 percent of women in the trastuzumab group were free of distant recurrence, as compared with 81.5 percent of women in the control group (absolute difference, 8.8 percentage points; 95 percent confidence interval, 5.5 to 12.1 percentage points); the respective rates at four years were 89.7 percent and 73.7 percent (absolute difference, 15.9 percentage points; 95 percent confidence interval, 11.1 to 20.8 percentage points).

http://www.nejm.org/doi/full/10.1056/NEJMoa052122#t=articleResults

Adjuvant Trastuzumab in HER2-Positive Breast Cancer  We randomly assigned 3222 women with HER2-positive early-stage breast cancer to receive doxorubicin and cyclophosphamide followed by docetaxel every 3 weeks (AC-T), the same regimen plus 52 weeks of trastuzumab (AC-T plus trastuzumab), or docetaxel and carboplatin plus 52 weeks of trastuzumab (TCH). The primary study end point was disease-free survival. Secondary end points were overall survival and safety.
RESULTS At a median follow-up of 65 months, 656 events triggered this protocol-specified analysis. The estimated disease-free survival rates at 5 years were 75% among patients receiving AC-T, 84% among those receiving AC-T plus trastuzumab, and 81% among those receiving TCH. Estimated rates of overall survival were 87%, 92%, and 91%, respectively. No significant differences in efficacy (disease-free or overall survival) were found between the two trastuzumab regimens, whereas both were superior to AC-T.

http://www.nejm.org/doi/full/10.1056/NEJMoa0910383

Lucy, I don't understand.  Isn't disease free survival the point?  Also, wouldn't it be hard to post actual overall survival numbers because these studies are too recent?  You'd have to wait until everyone in the various groups died off and then determine what they died of.

If anyone wants to read a terrific book...Eric Topol, MDs, The Creative Destruction of Medicine is an eye opener!  I can't rave enough about the book:

http://www.amazon.com/Creative-Destruction-Medicine-Digital-Revolution/dp/0465025501

http://creativedestructionofmedicine.com/

Barbicorn...Beesie is the go to person for statistics. I said what I did to the satistics my oncologist gave me...in that any tumor 2 C and under without node involvement is stage 1. She said 75% no recurrence with surgery alone. She said if I did therapy it would give me 15% inusrance of being cancer free....Yet, of the approx 25% about 15% even with therapy would have a recurrence. If my tumor was more than 2 C I would be stage 2, and I believe it was 54% with surgery alone with no recurrence. My oncologist then added that these satistics did not take in the HER2+++ factor.  

In the end, no one knows where they fall. Our bodies differ, and what might work for one person might not work for another. Satistics are a guideline only. There are a few women who I know who are her2+++, who did not do herceptin and seem to be fine. They either fell in the safe number where surgery or other therapies worked for them. Alaska Angel is one of those ladies.

I struggle with side effects from medicines. One side effect may lead to other problems worse than cancer, such as a heart attack or stroke. We are faced with tough decisions. I am timidly doing the herceptin. I chose herceptin because it flags the immune system to destroy any possible micro-cancer cells (hopefully). Your immune system needs to be strong to do this. I've had herceptin twice now, and my immune system is weakened, which means it's doing it's job. I hope it's not weakening my heart. I see a cardio doc Monday.

Herceptin gives me a small headache and some fatigue the day of and it is slowing my hair growth down.  Other than that, my heart is fine - it's a piece of cake compared to chemo.  

I have to say, you've asked this question repeatedly on many different forums and gotten pretty much the same response on every thread.   If you don't want to do it, don't do it. It's your life, no doubt.  But I doubt that you will find the validation that you are looking for at BCO.  Everyone thinks passing on Herceptin is super risky.   

barbiecorn,

Statistically, who knows whether those who die of a heart attack and who were on a drug that can increase the likelihood of heart attack are recorded as dying of a heart attack as the main cause, with the drug maybe listed as a "potential secondary cause". We know that trials generally have criteria to pick up on it, but that too is a judgement call being done by those who are generally hopeful that the drug "works".

A.A.

Yawn.  This again???

Yes, AA, we know that you had a crappy doctor who didn't tell you that you were HER2+ and that there was an HER2+ trial.

Yes, we know that there is no data available on Herceptin without chemo.  This discussion and the reasons why there have been no trials like this have been beaten to death in threads on this forum and in the HER2+ forum already.    

Yes, we know that you think all research trials are biased. I have a research background and I'm pretty good at picking up information that suggests that there might be bias in a study. Frankly when trials are set up with an equal number of women randomly assigned to each treatment regimen (as the trials that I quoted were), I fail to see how there was any built-in bias built.

Yes, AA, we know from your numerous posts (hundreds?) on this subject that you will challenge everything and anything that anyone says about the benefits of chemo and Herceptin for those who have HER2+ cancer.  It seems to me that you care more about the principle of challenging the efficacy of chemo and Herceptin than you care about the long term survival of the women who may be best served by having these treatments.  

Yawn. This again!!!

barbicorn, I am with you. I understand. You come to bco with a question in hopes that you can make sense of your dx, and what is the best thing for you to do. You want support and help, and sometimes we visit different threads looking for someone who will hear us and in some way validate what we are wrestling with, and going through. You probably don't know where else to go but for bco. BCO promotes conventional medicine. I am not against conventional medicine. It works for some people, but there are other options out there. It is highly unlikely you will find them here...more likely if you are looking for a pure alternative treatment then this website may not be for you, you need to look elsewhere. I have been here so long and developed friendships on both sides of the fense that I' am somewhat connected although at times I've tried not to be.

With that said, I being your age understand your concerns. I too have a family with heart problems. Plus, I had rheumatic fever as a child. It was a huge step for me to do the herceptin. I chose it due to it locking down the HER2+ receptors and like I said flagging the immune killer cells to destruct cancer cells. In my situation what concerned me was the biopsy cut off part of the tumor leaving the rest to possibly seed elsewhere. It was three months between the biopsy and the mx I had...so I wanted to make sure I'm doing something that made sense to me and hopefully would kill stray cancer cells..

...I am very concerned about my heart. If I had the choice, I prefer to die of cancer than a heart attack. Perhaps because of my age, compared to younger women here, I have had more herceptin side effects. The first imfusion of herceptin was stopped several times due to a headache, nausea, shivering cold, leg ache, and other minor problems. My heart was checked during the first infusion and my blood pressure went up so I was given steriods, and benadryl, and nausea meds. But, after the meds wore off, my headache worsen, and I also had shortness of breath, and chest pains. At the end of the three weeks the chest pain was gone.

The second imfusion wasn't as bad. Before they started the imfusion, they gave me benadryl by IV, and tylenol. I didn't notice any side effects. But later that day, the headache returned, and I notice heart palipations. I have a stethoscope so I listen to my heart. It is constantly erratic. It sounds normal for a few beats and then jumps all over the place. I had my husband and daughter listen, and it sounds weird to them as well. So, Monday, I'm seeing the cardio dr. to make sure my heart is ok. If it is, I'll continue for the first three months and go from there.

You said you are seeing your oncologist tomorrow. This is huge. She will go over every reason, and every option out there, including chemo. My onocologist is pretty persuasive, but she had no idea who she was dealing with. My bc surgeon who sent me to her was shocked after seeing my oncologist I was still headstrong and pretty much got what I wanted. Do your homework, and go in with every question imaginable. Hopefully you have a good oncologist, who won't push you into doing something you aren't comfortable with. Remember, it is your body, your life.

I hope I can do the herceptin. I am fortunate in that I have a very good oncologist. She gave me every scan before treatment. She is covering me well, making sure through treatment I'm ok. I said, last time, I could see myself bolting. She said, she wouldn't let me. It's nice to know that your doctor really cares.

And, it' is important that you know that we care about you as well. Again, I understand why you are asking this question in more than one place. This is a huge decision, and your life is at stake. Some people can handle treatment more than others. It's important you listen to your body. In the end for us it is quality of life.

(((hugs & prayers)))

barbiecorn: 

From the New England Journal of Medicine:  Here are your recurrence risks with traditional chemo (no herceptin) and the 2 mostly commonly used herceptin regimens.  No info is available on alternatives because they were never tested.  (click on link to supplement; see the last page...Supplement table 1B to view nejm version)

http://www.nejm.org/doi/suppl/10.1056/NEJMoa0910383/suppl_file/nejmoa0910383_appendix.pdf

For a tumor that is greater than or equal to 2 cm, 5 year disease free survival is

ACT (harsher chemo, no herceptin) 71%

ACTH (harsher chemo regimen with Herceptin) 82%

TCH (less harsh chemo regimen with Herceptin) 79%

Since you are node negative, and these stats apply to both N+ and N -, I would guess your odds of recurrence would be lower than this (unless your tumor is very big).

Since chemo alone (no herceptin) decreases risk of recurrence in Her2+ cancer by about 50%, I would gestimate risk with out chemo for tumors greater than 2 cm would be about double the risk with chemo (2 x 29% = 58% risk of recurrence).  Unlike the above figures which I copied directly from the NEJM study report, this is strictly my gestimate based on the many articles I have read about Her 2+ BC.  Again, I would guess your risk would be somewhat less than 58%( 40 to 50%??) because you are node negative.

I personally doubt there are any alternatives that can decrease your risk of recurrance any near as much as chemo + herceptin.  I know that many on this alt. forum who will tell you there is no evidence that they can't.  This is true - there is no evidence that they can't.  But most of the people who strongly advocate alternatives, even for aggressive, high risk Her2+ cancer, don't have their lives on the line to the extent you do.

Good luck with your decision and treatment, either way you go.

I wonder how many studies have been done including women 65 and over? Aging presents problems without adding harsh treatments that could be the straw to break the camels back. The immune system, bones and heart are more likely to be compromised due to chemo and or herceptin more than someone 40 or even 50.

I would love to do the herceptin for the year, but highly doubt my heart can do it. Since takin herceptin (2 infusions), I have had a lot of heart palpitations, irregular heart beats. Today I saw a cardiologist. He heard my jumping heart. He said it seems that my heart muscles are weakening. So...to make sure on he 21st of this month, I'm wearing a belt to montor my heart for 24 hours and another heart echo. He isn't sure. Meanwhile...I have another herceptin infusion on he 19th of this month. Should I do it? Not sure. I wish I could do it for 3 months.

If I choose to forgo herceptin, I won't be doing any conventional treatment other than surgery. I will just do what I can to stay healthy, and wait and see approach. If I have a recurrence, I will trust God with my life. I've had a great long life. The years I have left it is about quality of life. This is what I believe baricorn is also saying.

I believe it is meant to be an alternative to Herceptin

ETA  Results:In vitro experiments proved that HER2-Affitoxin is a potent agent that eliminates HER2-overexpressing cells at low picomolar concentrations. Therapeutic efficacy studies showed complete eradication of relatively large BT-474 tumors and significant effects on SK-OV-3 and NCI-N87 tumors. HER2-Affitoxin cleared quickly from circulation (T1/2 < 10 minutes) and was well tolerated by mice at doses of 0.5 mg/kg and below. Immunogenicity studies indicated that HER2-Affitoxin induced antibody development after the third injected dose.

Conclusions: Our findings showed that HER2-Affitoxin is an effective anticancer agent and a potential candidate for clinical studies. Clin Cancer Res; 17(15); 5071-81. ©2011 AACR

http://clincancerres.aacrjournals.org/content/17/15/5071.abstract?sid=dcfed5f8-5ea0-41fa-9584-5c4d4cbdacf7.

It does not look like clinical studies are proceeding yet - another one bites the dust ? Competitor to the "miraculous" Herceptin ?