I think it’s time for us to gather at the round table.
I’m talking about all the big cancer movers and shakers in this country…Some leading doctors, researchers, founding fathers of cancer foundations, all the folks who have made a big footprint on this disease and then and most importantly, include some long standing cancer warriors. People who have been through the hell of cancer treatment and the agony of metastatic disease.
Everyone comes to the table, but the only voices spoken, are those of the warriors. The “experts” need to listen to these warriors. Listen and take notes…the warriors will tell them what their real concerns are when it comes to treatment, healing, living and dying.
Care givers should be included at the table too. We know about these things. Experience has taught us what the real concerns of living with cancer are…so much more than the medical side of the disease.
We’ve seen town meetings on so many subjects….the economy, finding a job, war.
Why not cancer?
Pull up a chair.
July 11, 2011 @ 2:11 pm
Dragging your partner through cancer gives them the privilege to sit at the table. They have seen it all, and still they stay. And they will continue to stay and speak for us when we cannot, and push us forth when we don’t want to.
July 10, 2011 @ 4:09 pm
Progress is too slow– many years ago you would have had radiation and some sort of chemo…the same today.
UNACCEPTABLE
July 9, 2011 @ 8:44 am
Thx Mo for the tip about Duke. Go and read the series of events not to mention the foot dragging by the administration. Why did they do it? The answer is contained in the article….they formed a company, millions of dollars came forward to support this new company with Duke participating as well. Greed personified along with an ego so large as to defy description. But never mind…they are only cancer patients (sarcasm off)! For these two doctors, they must have taken the newly, revised Hippocratic oath….”Try not to do any harm but at all costs maximize the revenue stream”.
I went to Duke for melanoma treatment. I was and still am very impressed by Duke and its physicians. This situation is not an anomaly relegated to Duke but most likely occurs far more than we’d like to believe.
July 8, 2011 @ 9:11 pm
Today’s revelations about the Duke genetic research/cancer trials were so disheartening. The research was found to be so flawed; people entered the trials with such hope. . . and lost their lives. Duke is now being sued. I have to wonder where else this is the case.
July 8, 2011 @ 7:16 pm
A good idea Laurie. My concern would be, once again, it would a pep talk from all of the docs and researchers telling the patients how far they’ve come and that so many trials offer such promise, etc. Now admittedly for some cancers, real progress has been made, but still patients are dying. Just look at the oncology waiting rooms, the chemo rooms and the surgical suites filled with patients and caregivers because they are newly diagnosed or the cancer has returned, etc. There doesn’t appear to be any sense of urgency…the trials go on and on and on even though it is obvious that it offers nothing but it can’t be stopped until some magical, mystical number of failures has occurred. For those trials where it appears to be working in a significant number of patients, expand it, stop the placebos and give it to all. Share the information among all cancer centers and researchers and trials immediately if not sooner. Does it really take 3 or 4 years to know whether or not a drug or a protocol is working…of course not!!!! It just seems that this is all just an academic exercise following a prescribed path and an end-game of statistics that deem success or failure. Meanwhile, patients die and families are devastated while the researchers are trying to achieve some end-game numbers. Frustrating, infuriating….sometimes it seems that my head will explode when I listen to the pontification of these academics whose greatest concern is that they will lose their funding for more research.
I guess you can tell that I have an opinion and it is not a positive one about the state of all cancer research. Patients are surviving not because of research but in spite of it. Drugs that have been deemed ineffective and largely useless are saving some patient’s lives. Some drugs after being on the market for several years while saving numerous patient’s lives are now deemed too toxic to be used now. My question to those who render such a decision…..is cancer more or less toxic than the drug that has been shown to work in a statistically significant (their measures not mine) of patients? Give me the drug. I’ll take my chances.
Surely there must be a better and faster way to determine the effectiveness of drugs. A month or two can be an eternity in the life of a patient and his/her family. I’m all for a town hall meeting but I am not ready for just another pep talk from some big muckety- muck who hasn’t treated a real patient since he/she was a resident and is on the payroll of some big pharma.
End of rant!!!!
July 8, 2011 @ 6:13 pm
Amen Laurie!