Does everything need to be in place for Herceptin

[Kristen]

I have read so many things on this board and have learned a great deal. I want to thank all of you for keeping up with new treatments and articles that are accessible to us.

Do we really know that much about HER2 and Herceptin?
I have read about numerous vitamins and supplements and clinical trial data that all seem not to be related. There are vaccine trials and you have to carry a certain protein in order to be included. You have to know if your PTEN levels are low or high to see if Herceptin will work for you. The other factor is Tyrsine Kinase activity to see if it will inhibit the growth of the antibodies. Radiation, Diet, Cox 2, ER statis,enviromental issues, low dose aspirin, Tannis or wine, even Dr. Love's web page says that beer maybe good for you and other readings it says not to drink?

We have all this information, but what do we do with it? It is just a crap shoot? Do we just pick and choose and hope that one of these will work for us or give us the extra edge that we need to stay NED?

I am asking what do you base your theory on in what is going to help you?
Maybe it is information overload, but people who have strict diets recure, people who should have died are alive, thank God and others we have lost that by all indications should have made it. I don't know what to spend my money on or my time. Any information will be apprectiated. TY. Take Care K

[Lisa]

What a thoughtful and tough question...

Here's my take, and it's just another opinion. First, find a practioner (onc) who you like and trust. Ask him/her a lot of questions and expect answers. A good onc will be up to date on all trials and treatments.

Next, stay informed. Keep a good perspective about trials and treatments. Many trials are very small. Others cover years.

Next, use common sense. Do what your intuition tells you to stay as healthy as possible. Keep in mind the body/mind/spirit connection and cover all your bases. Don't rule out complementary treatments, but again use your intuitition.

If there were one treatment that worked for everybody, wouldn't life be grand. As it is there are 100 kinds of cancer with seemingly as many treatments. We still don't know much, do we?

Love and light to all here and above,

Lisa

[Margaret]

Hi Kristen,
Thanks for getting me to think today about what I do to help myself stay in faith and out of fear. It's a choice every minute of every day. I can either find a set of circumstances that will tell me all the things I should worry about and all the things that could go wrong or I can choose to look at the fact that I'm alive and breathing today. It's a gift given to me and there's no guarentee for anyone that they'll be given the next breath.
I think for myself, I have to do my best at making healthy choices for my body and then just thank God I'm alive today. wow, it is a gift. I really want to make the most of every breath. I work hard at living today and not worrying about tomorrow. It does take concious effort to keep my brain from going to all the fears and the 'what if's' and the 'if only'. I'm learning how to be present right now and be thankful.
I do understand your concern. I'm in a similar situation. So I thank you for bringing up your point. Hope you find this helpful.
Margaret

[Kristen]

Margaret and Lisa,
Thank you for your posts. I don't want to give anybody the wrong impression that I think aobut this all the time or depressed. I just don't know where to put my energies into.
It seems like every day something new comes into play that will predict or help our situation and if you read all the vitamins or supplements or treatment options it's just like what do you do? I think Lisa and you are right in it being a common sense thing. Today I just started thinking about ok, I want to be vigilant and do the right thing and you look up what to do and there are so many if's and maybes. Some of the things people do, for example diet are very strict and it still comes back. So I believe it is a combo, but of what? Gut instinct very possibly. I embrace the day and think it's gonna do what it's gonna do. I am just very happy and greatful that I am NED. Thanks again. You are both wonderful women with great insight. Take Care k

[*_louise a._*]

has anyone participated in the phase lll trial of ACT and herceptin for early stage BC? i'm not sure i want to do it, as i've read lots of terrible stuff on herceptin's side effects...any ideas?

[Kristen]

Louise,
A lot of women have taken ACT, A/C seems to be the standard for HER2 and the reports coming in with Taxol or Taxotere seems promising. The phase III trial, I just completed in December, however I didn't have A/C. I had Carbo and Taxotere and Herceptin. My first infusion was with Herceptin only and then the second day the other 2. In the phase I trial I beleive they did have some cardiac failure problems, but I beleive they have the dosage and administration correct. At least for me, I had a good experience with the combo.

If you do get in a trial, they do MUGA scans that show the outflow function of your heart and as long as you are above 50 you are doing fine. As for long term effects of Herceptin, a lot of women on this board have been on it for years and seem to have no complications. If your MUGA scan does drop below 50, they will take you off Herceptin for a period of time and the heart seems to repair itself and then patients go back on. Yes, there is a risk with any treatment that you go on but for HER2, this is a targeted treatment with Herceptin for the oncogene. We are lucky to have it. You have to feel comfortable with it or don't do it. They are many abstract articles you can find at the National Library of Medicine and go to PubMed and type in HER2 and Herceptin. You can read all day long. Read the most recent ones they are most up to date. Things change very fast it seems and one study could contradict another. Do some research and feel comfortable or try something else. Take Care and Good Luck in finding out what is right for you. K