[Gina]

Hi, Grace,

We know each other from way back so I take no malice at your comment and I realize that this thread has been a bit heated. I also publically apologize to Debbie for teasing her about being an oncologist. That was way out-of-line, and I am sorry, but I still disagree with her comments completely.

Grace, if you have read my threads at all and even moreso from our private emails, you are aware that I aways suggest that the real time to worry is when the tumor marker numbers "go on a run"--they will start rising exponentially and usually rapidly. Many times I have suggested that moderate fluctuations in the markers are often of little consequence and I have even written somewhere here that I have experienced markers going up during certain treatments to be a good thing as it may indicate solid tumors breaking up, especially when the numbers start eventually to drop back down again rapidly. Also, you know that when I look for signs of progression in myself and others, I do not only consider the tumor markers, but also look at scans and the whole bloodwork picture--when the liver enzymes, GGT, Alk phos, and sometimes even bile are also elevating at the same time as the tumor markers, you can be certain, in most cases of her-2 mediated disease, that something is going on somewhere.

Folks, Her-2 protein is not a mythological creature, but something that is scientifically measurable. We know many things about the her-2 protein...we know when it goes up, TNF-Alpha goes down badly affecting the cells ability to commit apoptosis. We know that the more her-2 there is circulating in the system, the more chance there is for cells to grow uncontrollably and, sadly, in many places.

Grace, I am so sorry that you blame me for your current situation as I never want to say anything that makes this already bad her-2 situation worse in anyone, but folks who read me here would know that I would never under any circumstances advise the high levels of toxic chemo that you and your oncologist decided to use. I have used only Herceptin to control my mets since 1999 and have horrible misgivings about the side effects of many of the drugs being used now and in the past on folks with her-2 mediated disease.

In fact, I remember the specifics of your case quite well and have saved our private e-mails that I just re-read as I keep many her-2 case studies to review and learn from, yours was one of the most intriguing. I would be happy to reprint our discussions here. You wrote to me first in Sept 2006 about my comments on Menendez work and olive oil boosting the power of Herceptin and I told you I would highly recommend it, along with Olive leaf and the regular vitamins and minerals I always recommend. Later, you researched more on the serum her-2 tumor marker and even wrote some of your questions to Dr. Carney and made your own decision to get the serum her-2 checked which first came out to be 16. Clearly, I supported your decision and applauded what all you had to go through to access it. We later discussed Carson's work and I was most impressed at how well you were researching many of the more difficult aspects of this illness and even its future potential treatments. Clearly your background as a professional writer was most useful to you in seeking many perspectives and points of view not merely mine. You made your own decisions as we all do.

However, your case was, in my judgement, quite high risk for recurrence, you were her-2 positive and ER- and PR- as I recall--based only on what you told me in your e-mails, and even though you claim that my proddings about the importance of the tumor markers and emphasis on taking them regularly forced you to take more agressive treatment than you may or may not have needed, it is important to note that you are still here, and have since lived to write your book and actually seem to be doing better than many others who read this site who may not have been quite as lucky to have had access to markers or understood their importance. Like it or not, even you used the tumor marker information and your own research to base some of your decisions on and though I agree tumor markers are not perfect, again, I note that you are still living.

Folks, Her-2 mediated disease is very aggressive and its etiology is poorly understood. I think Grace's case, contrary to her intention, provides an excellent example of how the tumor markers may not only have saved her life, but increased its quality. We forget that she could have just as easily died, as thousands have already, from the "not knowing". Yet, Grace has lived, thank goodness, in part, from being aware at least of her numbers and the possible dangerous situation that they could have put her in.

Grace, quite frankly, I still contend that there was a high probability that you were progressing when the tumor markers were increasing and that had you sat idylly by and taken no action, most likely, you would not be here to rebut me..., but I AM VERY GLAD YOU ARE!!!!....smile...

As for many of the problems and side effects you are now experiencing, most can be managed and are not immediately life-threatening as full-blown her-2 mets would be. If you want to discuss this further, you are welcome to respond below or to e-mail me at home any time.

I personally think it was amazing how even after all you went through, you were still able to achieve your dream--your book. You are a role model for us all.

Keep on keepin' on,
Gina