NeoAdjuvant Chemo w/Herceptin

Hi everyone.

I'm new to this site. I'm starting neo adjuvant chemo TOMORROW. My BC was diagnosed last month: IDC, 2.6cm, ER/PR+, HER2+, grade 3, they believe node- .

My onc has me following the MD Anderson neoadjuvant Herceptin study, with modifications: he's ordered 24 weeks of Herceptin, the first 12 weeks w/ weekly Taxcol, the last 12 weeks with FEC every 3 weeks. I know there is a slim possibility of heart issues - and I know that I may have to fight my insurance co for the next few years to cover the Herceptin.

My first opinion onc didn't even tell me about this - he had recommended a clinical trial of AC + T with or without Navilbene. Thankk goodness I went for a second opinion.

Anyone else been through this? Appreciate your thoughts. I am feeling like my own doctor, if you know what I mean, and that is NOT good!

Jo-Ann

Jo-Ann,

You should feel like your own doctor. No one is going to look out for you better than you. I was diagnosed StageIIIB with inflammatory BC. I started Neoadjuvant with Herceptin and Taxotere. This is my second primary BC so AC was out of the question. I told my onc that I wanted herceptin and she swore up and down that I would not be able to get it. It turns out I did.

The problem with insurance is that they ask you for proof of mets. If you have a mail order benefit, you might be able to sneak in the Herceptin that way.

Doctors are Human. I am a pharmaceutical rep. I researched studies for chemo combinations and then took them to her and told her what I wanted.

Kim

Dear Jo ann
This is a frantic and overwhelming time for you. You are in good hands, generally at MD Anderson...they had excellent physicians and are doing incredible research there...it sounds like you are on the right track now...do what you can to get insurance coverage...I am 1 year into a stage 4 diagnosis...after a 2nd opinion at Sloan I had herceptin and Navelbine, then weekly herceptin thereafter...and thanks to this web site, got into a clinical trial in Seattle....you are on the right track; ask questions, stick with your research and you will come up with the course of action that is right for you..
love Kim from cT

I'm the husband of a breast cancer patient and have been viewing these post for over a year and a half and the only concern I have is that a large amount of the women on this site feel they should doctor themselves. I think you should look for a doctor you are confident with, trust him or her and focus on positives and live your life to the fullest. My wife is a stage 4 patient that only looks forward and gives little thought to her medical problem when she is not in the infusion room or a doctors office. She is doing well and I truly believe the attitude is the most important factor.

Husband,
I am so sorry to hear of your wife's stage, but as you know from this board women are stage 4 and are stable and leading very good lives.

I am glad you and your wife have found a doctor you can trust. I feel that some to most oncologists don't know a lot about HER2. This site is one place we can come and these wonderful women help us get through our primary treatment and when some reocur they are very supportive. There background and knowledge is essential to us, if you have been reading this site for 18 months than you should understand how some doctors are set in there ways on what to give and thank God, new research and advances are taking place every day and this is a place we can come, ask questions and have our onc's look into it for us. But I agree with the ladies above that we are own best advocate and to/ or not take part in it is every womens own decision.

You insinuate, that we are not living our lives to the fullest and that is not true, at least for me. I thank Joe and Christine for getting this site up and running and the ladies that contribute to it to help others. Breast Cancer is a scary roller coaster and sometimes we need encouragement and need to be understood by others who have forged the path ahead of us.
But that's just my opinion.

This purpose of this website is to educate every woman who is HER2 positive as to all of the treatments and options available to them. It is NOT intended to be a substitute for professional medical advice.

Our goal is to make every patient an active partner in their medical treatments where she will be able to intelligently discuss her medical condition and alternative therapies with her physician. In many cases, our members make their own oncologists aware of latest cancer eresearch.

As for quality of life, in the past few days, I have read the following:
Stephanie is traveling to France.
Irene is planning a Caribbean cruise.
Sandy is visiting the west coast from her home in Maine.
Christine is visiting the New York City area from California.
Last year JoJo went to the summer olympics in Greece.
Sandy, Christine, Ester, Stephanie and myself went to the San Antonio Breast Cancer Symposium.

Here is an email that we received from Dr. Dennis Slamon:

"Hi Christine,

Congratulations and cudos on the recognition for a job well done. You should be very happy about and proud of what you have been able to accomplish as well as the woman you have directly helped through your efforts. Once again, congratulations. Perhaps I’ll see you in San Antonio if you are attending the breast cancer meeting.

Best regards,
Dennis"

Dr. Slamon also has volunteered to serve as our honorary Vice President in recognition for the service that we provide to breast cancer survivors.

Warmest Regards
Joe

Kristen,
I have to agree with you. YOu are your best advocate. That does not mean you should not trust your doctor, but I think a lot of the more remote areas the doctors tend to be hindsighted and not aggressive about their treatments. It is too late to look back and think we should have tried this that is why it is important to be proactive. This man who wrote the post before you has not read the new members asking for advice about early Herceptin and other meds that their doctor did not suggest.
Thanks,
Anne

To the Husband,

I must say I'm envious that your wife has a doctor that you trust with her life, implicately! A doctor that finds time in his busy schedule to research the newest treatments, who knows your wife's body better than she does, an oncologist who is also an expert in wholistic therapy, pain control, psychology, supplements, research, pharmacology, molecular biology, and also happens to be infallable. However, I for one do not believe that this person exists, not in this life time nor the next.

As for attitude, what's wrong with wanting to live? If you've read the postings, many of our members are here because it is their last hope for success, being either abandoned or screwed around by the medical community.

If I were a lurker for 18 months, here is what I would have gleened from this web site:

1. there are no negative attitiudes dragging people down,
2. the level of knowledge here is second to none,
3. this is a community with common goals the first being the eradictation of this disease,
4. we all believe that self empowerment is critical to survival and,
5. medical care is a partnership with the patient being the hub of the wheel of interaction.

My thoughts: lurking for 18 months tells me someting about you, that there is an unfulfilled need.

My suggestion: register, get involved and contribute. Cancer hurts and you are clearly hurting; sharing helps.

Respectfully,
Al

Dear Husband,

Tell me something. Have you never brought a piece of information that you learned about from this website to your wife's doctor to discuss? Do you take everything her oncologist says at face value and never question it? This website provides all levels of information and members can take or leave whatever they choose. Something has obviously kept you coming back time after time. What might that be? I'm with Al, it's time for you to register and give back a little. Every member has a different perspective and a fresh point of view.

I am a stage 3 survivor and I find it amazing that your wife "gives little thought to her medical problem when she is not in the infusion room or a doctors office". Perhaps she can add to this website in that regard. Like I said, we look for any and all contributions.

I absolutely love my oncologist. One of the things I love most about him is that he is willing to listen to me and consider what I say seriously. I consider us truly partners in my care. That's what makes me comfortable.

POSITIVE ATTITUDES PREVAIL HERE!!!

Susan