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StephN · 01-09-2006, 02:02 PM

... that we here are real flesh and blood patients (and caregivers) who are fighting for our lives NOW. Look at my situation - ALL of my treatments have been clinical trials starting in 2000 with my adjuvent Adriamycin on weekly doses with Neupogen support. I have to exclude my Gamma Knife, though, so am speaking about my various chemos. What is now known about why these adjuvent treatments did not work for me has added to the knowledge base. And I am very thankful that one of the trial drug combos finally DID work for me. I know this could change any day, but that is not my first thought every morning!

My med onc is a BIG fan of clinical trials and brought up the subject of the vaccine trials when I was first diagnosed in 2000. Unfortunately I have not yet been able to qualify, though I think the last barrier has been removed lately so that there is one I could go on.

My comment above in this thread about how many new breast cancer patients there are as potential trial candidates came from something I heard in a conversation with some high-powered researchers at the San Antonio Symposium. It is like they want to use patients as they do the mice (or virgin maidens) and don't want our various case individualities or histories to complicate the trials any more than they already are. And this was not in any reference to the FDA. They need to establish baselines and choose pathways from which to work. Unfortunatly this excludes many people who may benefit now from that therapy.

Sad, but true - how do we break through this? The only way right now is if we can't qualify for a trial we have to go off label with some new drugs if the old ones that are approved are not working. Or wait for new ones to be approved or new trials to become available. And there are tons of trials, but for those of us who are a long way down the cancer road the options decrease as we go, but then suddenly a new direction may open up.
YEAH - something to get bent and bitter about, as we try SO hard to find a way to live a reasonable life with a harsh and chronic disease.
Just remember the squeaking wheel gets the grease! Yell and scream if you have to.

A.A. - if you look at the abstracts from San Antonio you will see a whole lot of trials that INCLUDED Herceptin. The researchers now know a lot more about who benefits from Herceptin and what kind of drugs are synergistic therewith. They know that if we are HER2+++ we NEED the Herceptin as well acting against the tumors to achieve good results. That much was quite evident in what I saw in the presentations and heard privately. AS well, some new trials that include Herceptin were announced.

01-09-2006, 02:02 PM	#16
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	It is not lost on me ... ... that we here are real flesh and blood patients (and caregivers) who are fighting for our lives NOW. Look at my situation - *ALL of my treatments have been clinical trials* starting in 2000 with my adjuvent Adriamycin on weekly doses with Neupogen support. I have to exclude my Gamma Knife, though, so am speaking about my various chemos. What is now known about why these adjuvent treatments did not work for me has added to the knowledge base. And I am very thankful that one of the trial drug combos finally DID work for me. I know this could change any day, but that is not my first thought every morning! My med onc is a BIG fan of clinical trials and brought up the subject of the vaccine trials when I was first diagnosed in 2000. Unfortunately I have not yet been able to qualify, though I think the last barrier has been removed lately so that there is one I could go on. My comment above in this thread about how many new breast cancer patients there are as potential trial candidates came from something I heard in a conversation with some high-powered researchers at the San Antonio Symposium. It is like they want to use patients as they do the mice (or virgin maidens) and don't want our various case individualities or histories to complicate the trials any more than they already are. And this was not in any reference to the FDA. They need to establish baselines and choose pathways from which to work. Unfortunatly this excludes many people who may benefit now from that therapy. Sad, but true - how do we break through this? The only way right now is if we can't qualify for a trial we have to go off label with some new drugs if the old ones that are approved are not working. Or wait for new ones to be approved or new trials to become available. And there are tons of trials, but for those of us who are a long way down the cancer road the options decrease as we go, but then suddenly a new direction may open up. YEAH - something to get bent and bitter about, as we try SO hard to find a way to live a reasonable life with a harsh and chronic disease. Just remember the squeaking wheel gets the grease! Yell and scream if you have to. A.A. - if you look at the abstracts from San Antonio you will see a whole lot of trials that INCLUDED Herceptin. The researchers now know a lot more about who benefits from Herceptin and what kind of drugs are synergistic therewith. They know that if we are HER2+++ we NEED the Herceptin as well acting against the tumors to achieve good results. That much was quite evident in what I saw in the presentations and heard privately. AS well, some new trials that include Herceptin were announced.