[Rolepaul]

This study and Lani's follow up says a lot. If you are node positive, and even more so at 3 or more nodes, the use of Herceptin has been very effective in the treatment of HER+ disease. Prior to the introduction of Herceptin, chances of being progression free two years after diagnosis was on the order of 77%. Those are still considered pretty good odds. The problem was that at five years it was on the order of 30% and at ten years the chances of being alive were minimal. I went through this with my mother between 1990 and 2000. Some of the first patients treated with Herceptin were the women treated at Balboa Naval Hospital in San Diego. There are a lot of untold stories out there. They knew about the risk of attacking the heart, and it did for my mother, which resulted in the pre-Herceptin treatment regimens that were not successful.

So the CNS band wagon that I am trying to get going for diagnosis and treatment might get another pony or two from this study. Diagnosis early means that the SRS treatment can get the ones that are observed. MRI scans or the brain and spine are very expensive, and may not be warranted for all that many cases.The goal should be to get an understanding of why it will sometimes go to the brain/spine, and why it will not in others. The second goal is to determine the effectiveness of Gamma/Cyber Knife followed by Tykerb/Xeloda in keeping them under check. The third goal is to use an effective treatment if the oral dose medications and Gamma/Cyber knife treatments are ineffective. As Nina and I walk down the path to the third goal, we understand the situation better than most. Each time we get bad news, we seem to have to chop another path through to a clear road. It would be nice for the information to have been there previously. Nina being an RN and with clinical trial certifiction, and my background in the Pharmaceutical business has been a blessing and a curse. We are able to know what has opportunities and the odds of existing treatments being effective. We have been lucky to convince our medical team to accept us in the decision making process, and willing to accept treatment regimens that others felt uncomfortable with. At the same time it is difficult to hear that doctors are not willing to listen to some patients that bring sound logic to bear for treatment. It is our hope that in the near future these three goals have defined paths. I will tell you that I do not think the state of knowledge right now is where it needs to be.

Nina's care is expensive. Since the initial Brain MRI scan showed a large lesion on 11/2/09 to today, the medical costs paid by insurance are probably close to $800K, with our own costs for deductibles, copays, parking, med copays, and travel representing about $50,000. We have spent the last eight months separated by 1200 (actually 1235) miles. I have flown there every two weeks since the middle of December 2011 and burned up all my vacation. It has stressed family relationships due to living at her brother's house. At the same time, Nina's life has been one that Nina looks and acts without disease, even going bak to her previous profession of therapeutic massage a few times per week. Would I do it again? There is no doubt I would. Can everyone do this? No way. I would like to not have individuals and families have to make these financial and emotional decisions, and for healthcare to treat HER+ before and after CNS involvement to be straight forward, affordable, and easy to have occur. This disease has none of that right now. I understand it will in the future. Nina and I made our future by taking the lead. I hope if you have disease and read it, you can get the better medical results that keep you from having to go down this path, but if that is not the case, it is our greatest belief that you do have hope; a true hope in getting better. Medical care for HER+ has advanced beyond anybody's expectations, but it still has a ways to go. It is our belief that we will get there in the next 5-10 years, but it will be at the cost of too many women and their families. This forum is a way to get things out in the open. Even the NEDs out there stay around and help those struggling. That is why this forum is important and I thank it for being there.

Too many words and thoughts for the forum. I hope that Nina continues to talk to NED. I wish all of the women on this forum could.