[StephN]

Dear Tiger Daughter Jen -
It is easy to find an entity that is "too big to fail" to blame things on.

Have you ever ready the book, "HER-2, The Making of Herceptin" by Robert Bazell?

Or seen the movie based on this book called "Living Proof." You can see that on HULU and other web media. The movie leaves out a lot of interesting details, but the gist is there.
I mention these as it is the story of Dr. Denis Slamon's fight to keep on with his research that he felt opened a window to a new direction in drug development. You may know Dr. Slamon's name in connection with Herceptin.
Your mom and I have met and shared hugs with Dr. Slamon at the San Antonio Breast Cancer Symposium. Joe Druther, founder of this site, introduced us as "living proof" and that became a running quip every year when we would see Dr. Slamon again, that we were still "living proof."

I sure wish there was an answer for your mother; she has been a good friend of mine for many years now. When we met on this site in its infancy I was the one with the worst prognosis with mets all over my liver and on my sternum that had been treated, but were almost sure to come back. Sheila was a much earlier stage with no positive nodes. Her life was full and my energy level was low. SHE was MY role model!

Who would think at that time that I would be sitting here typing and she would be the person unable to take any treatment? NO ONE. It was not logical. But one thing I have learned for certain over these years is that LOGIC is no where to be found when it comes to cancer. This is one thing keeping the researchers in universities and institutes going - looking to find an iota of logic in the complexity of cancer proliferation. If not the logic, then how to follow the deer tracks in unfamiliar woods. Just when a research group thinks they have established a new pattern of down- and up- regulation in cells well enough to get a drug into trials, it may or may not pass the FDA. Maybe the one that did not pass was better, but we have laws and regulations and PEOPLE who can act as a god to decide these things.

And now we have "Death Boards" under Obamacare on top of the FDA. I know of a young family man who needs a bone marrow transplant, and is accepted here at Fred Hutchinson Cancer Center, but now his insurance provider is dragging its heels. His doctor has written letters to support the case, but still there is no approval. Yes, it is very costly, but his prognosis would be pretty good or the center would not have accepted him.

Jen, I know your frustration. I have felt it myself MANY times, but especially when I was told I would probably die. I felt it when my father was in the ICU and full care facilities for 8 months after his heart operation did not work well. I took my mother to see him every day, and that is where we spent our time. Mom was desperate for him to improve so he could get off the ventilator and come home, but he was never that strong again. She was so desperate that she was not really listening to what the docters were telling us. They tried to explain Dad's conditions in understandable language, but Mom could only keep tearfully asking her questions that had already been answered. My heart was breaking day after day after day. After Dad passed I plunged into the only real depression I have ever experienced.

None of this is helpful to your mother, because each of us only has one real mother. You are fortunate to have a mother who raised the bar of mother- and grandmotherhood. It was the same for my father. He also raised the bar and loved everyone so much. You and Sheila are in many constant prayers. Maybe you WILL stumble upon something, so keep sharing.