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AlaskaAngel · 08-03-2007, 10:03 PM

Terri,

I admire your determination. It is hard to have all the "right" answers at the "right" time to make the "right" decisions. bc is one endless set of questions that are usually hard to see coming -- partly because even though we pay for the studies we get, we don't get to see the results right away and the docs and nurses DO, so they have the lead time that we don't get, to be a little quicker to evaluate and make decisions.

What is the communication level with her onc? I'd print out the Oncolink article (because Oncolink is so legit as a source), or one of the other articles posted about the issue, and take it to the onc as a starting point for discussion, prior to next treatment. I do think the nurses doing chemo do not seem to be aware of the issue and they certainly should be, as this is not just a rabble-raising but a very genuine consumer issue. They are the ones who really do need to see the information in behalf of their patients. A lot of people here have "been there" in feeling funny asserting knowledge in dealing with the "experts" and it just comes with the territory I'm afraid. The question is still under investigation as to what the reason is for the poorer outcomes with use of Aranesp, but the questions that are being raised are not imaginary in the least.

Oncolink's article:

http://www.oncolink.upenn.edu/resour...&ss=222&id=937

"While these results and recommendations are sure to spur future research and ongoing evaluation of the safety of these agents, what are clinicians and patients to do with the information we have? The FDA advises clinicians and patients to remember that ESAs are given to reduce the need for red blood cell transfusions and not to treat symptoms such as fatigue. The risks and benefits of ESAs must be weighed against the risks and benefits of blood transfusions in each individual case when deciding whether or not to use the agents. The use of evidenced based guidelines, such as those developed by the National Comprehensive Cancer Network may be helpful in guiding the decision to treat with ESAs. In those who choose to use ESAs, it is imperative that doses be adjusted to maintain a hemoglobin level that does not exceed 12-13g/dl. In addition, the cost of these agents is not insignificant to the patient or health care system and must be considered in the overall risk benefit analysis.

Patients and clinicians must understand that no data exists to support claims of improvement in quality of life or fatigue. The manufacturers of these agents frequently used direct consumer marketing to promote these unsupported claims, a fact that concerns many patient advocacy groups.

Studies have found a decrease in the use of ESAs by oncologists in the months since the negative study results were publicized."

08-03-2007, 10:03 PM	#26
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	Good going Terri, I admire your determination. It is hard to have all the "right" answers at the "right" time to make the "right" decisions. bc is one endless set of questions that are usually hard to see coming -- partly because even though we pay for the studies we get, we don't get to see the results right away and the docs and nurses DO, so they have the lead time that we don't get, to be a little quicker to evaluate and make decisions. What is the communication level with her onc? I'd print out the Oncolink article (because Oncolink is so legit as a source), or one of the other articles posted about the issue, and take it to the onc as a starting point for discussion, prior to next treatment. I do think the nurses doing chemo do not seem to be aware of the issue and they certainly should be, as this is not just a rabble-raising but a very genuine consumer issue. They are the ones who really do need to see the information in behalf of their patients. A lot of people here have "been there" in feeling funny asserting knowledge in dealing with the "experts" and it just comes with the territory I'm afraid. The question is still under investigation as to what the reason is for the poorer outcomes with use of Aranesp, but the questions that are being raised are not imaginary in the least. Oncolink's article: http://www.oncolink.upenn.edu/resour...&ss=222&id=937 "While these results and recommendations are sure to spur future research and ongoing evaluation of the safety of these agents, what are clinicians and patients to do with the information we have? The FDA advises clinicians and patients to remember that ESAs are given to reduce the need for red blood cell transfusions and not to treat symptoms such as fatigue. The risks and benefits of ESAs must be weighed against the risks and benefits of blood transfusions in each individual case when deciding whether or not to use the agents. The use of evidenced based guidelines, such as those developed by the National Comprehensive Cancer Network may be helpful in guiding the decision to treat with ESAs. In those who choose to use ESAs, it is imperative that doses be adjusted to maintain a hemoglobin level that does not exceed 12-13g/dl. In addition, the cost of these agents is not insignificant to the patient or health care system and must be considered in the overall risk benefit analysis. Patients and clinicians must understand that no data exists to support claims of improvement in quality of life or fatigue. The manufacturers of these agents frequently used direct consumer marketing to promote these unsupported claims, a fact that concerns many patient advocacy groups. Studies have found a decrease in the use of ESAs by oncologists in the months since the negative study results were publicized."