Herceptin and Paget Disease

[lhalper]

What an eye opener my wife’s breast cancer has been for me. I never realized how many women are affected. This is truly a horrible disease. My heart goes out to all of you.

I am very confused about her2 in relation to Herceptin. It appears from the women on these message boards that it is the cure. When I read the study result for Herceptin I get a very different feeling. It appears for some individual it is the cure and for other it just does not work. Why? Are there other factors that make Herceptin affective or ineffective?

This brings me back to my original question. Have there been any studies with regard to Herceptin and Paget Disease of the Breast? Has anyone had Paget Disease and used Herceptin on this sight and what result have they had?

Obviously the individual on this and other message boards are the survivors, because the others can not leave messages sharing their experiences and knowledge. We can only hope that one day everyone will be a survivor.

[*_Celina_*]

Hi there,
I can't answer all your questions, but I wanted to point out that Herceptin is not a cure...there is yet to be a cure for cancer. Women who use Herceptin in combination with chemo tend to have good results. Some woman stay on Herceptin as a "maintenance" drug and I know for my sister, it has been remarkable in stopping further spread of cancer from the neck down. I think the term that is most frequently used, particularly for stage IV patients is "living with cancer."
Regards,
Celina

[Fontaine]

Breast cancer, along with many other cancers and other diseases, is ultimately a failure of the immune system to recognize and "nuke" abnormal cancer cells. Immunologists have a much better grasp on this than I do and have only recently discovered that the brain actually communicates directly with the immune system. This is a promising area of research and may eventually unravel some of the mystery surrounding breast cancer.

At the current time, all the scientific community is able to do is to diagnose and treat it. As Ihalper said, there is no cure. Studies only show results for percentages. If you happen to be one of the percentage for whom a given treatment works, all the better. Because they don't really understand how it develops in the first place, they don't know if it will come back, where, and for whom. Plus, every individual is different--every part of them. What may be the cause of the abnormal cancer cells for one person may not be the same as for another person. That's why the percentages differ. All doctors can go on are percentages and keep their fingers crossed. This, IMO, is why it's so critical for individual patients to learn as much about the disease and their own bodies as possible--to help their doctors help them.

Apparently, many women who get recurrences do so largely because of the behavior of their HER-2 gene. But that likely doesn't explain the whole picture about how and why they got it. I'm in a doctoral program and am looking into areas such as psychoneuroimmunology but there's a lot of territory to cover and I'm only one person and only halfway through my program. There's so much more to learn and know and that just takes time.

However, I will say that from what I've discovered, I strongly suspect that reaction to stress plays a large part. There are too many instances of people with "fatal" disease who completely recover and live out the remainder of their life disease-free, to discount the role of the brain and mind (and spirit) in the mix. But exactly what and how is a tall order and likely many years away from completely understanding to the point of being able to eradicate this disease.

A big part of the equation is having the will (as a society) to end this disease--much like AIDS, Alzheimer's, and Parkinson's. Sadly, because breast cancer largely affects women, that will has not been there until recently (much like the lack of interest in finding a cure for AIDS until activism reached a critical mass). I think that will is steadily growing and will continue to grow as more people become aware, get diagnosed, are diagnosed earlier and have the benefit of years to become activists.

An individual will that's determined to survive is probably the best "medicine" going. I highly recommend reading a book "The Whisper in Your Heart" to learn how one woman diagnosed as terminal was able to overcome her disease and over 15 years later is alive and well. It's a true story as I know the author (not the woman but the therapist who worked with her).

I'm pleased to encounter a man who gets it and truly cares. Just keep asking the questions and demanding answers to them! And my very best wishes to your wife.

[Laurie S]

When I first read over my pathology report, it stated that along with invasive ductal carcinoma, there was also found to be Paget's disease of the nipple. I was shocked by that b/c I had no symptoms whatsoever on my nipple. It is sort of strange, now that I think about it, but my onc did not even discuss the Pagets, when deciding on treatment. I did 4 dose dense a/c, then 12 taxol/herceptin. I am just finishing it up and will continue on herceptin for a year. I also went for a second opinion, and they too did not discuss the Pagets. I think I will ask next week at my appt about it. My diagnosis was Idc stage 2, grade 3, Her2+++, 4.7 cm tumor, er/pr-

Good Luck
laurie

[sassy]

Fontaine,

Could you tell me the author of The Whisper in your Heart?

Sassy