Post by Tony Crispino on Sept 24, 2016 10:44:04 GMT -8
Coming into October I always think of an old friend, David Emerson. Diagnosed with metastatic prostate cancer at age 42 he blogged his way into my life and we became great friends until he died before he turned 50 in October 2012. David and I were in different states, I in Nevada and he in Kansas, but that didn't separate us. We met in Washington DC and elsewhere doing what we did as advocates. We shared many things and in particular our taste in music. We both loved Kenny Chesney, ELO, ELP, Pink Floyd, and so many others. We also shared being young with a diagnosis of advanced prostate cancer.
I write to share a particular thought he had that I considered profound. Many guys are treated for prostate cancer and suffer side effects that affect urinary incontinence or ED among other things. David was so detached from that discussion. He was diagnosed with a PSA at 271 and mets all over. He would have gladly traded that dx for a treatment that cured him or gave him more time with Brad and Mary. In particular he was hopeful to see his son graduate and he was not able to fulfill that wish. Urinary incontinence or ED were not anything he would not have been happy to deal with in trade for that experience.
This is perfectly reasonable to me. Men with metastatic prostate cancer are many times terminally ill. The elephant in the room is not treatment side effects as the clock keeps ticking. Many times treatment decisions are not easy to make for men like David. He was trying everything he could including inclusion in clinical trials which failed to produce a treatment. XL-184, TAK700, and others, just didn't work out in trials to date. We never knew if he was in the treatment or control arms but his willingness to be a part of the trials was the type of guy he was. If it didn't work for him at least there would be data gathered that would help all metastatic patients in the future.
I occasionally see advocates actively trying to talk similar patients out of clinical trials because of the risk of not receiving a treatment or drug. This I find sad. From a personal patient basis, it understand it. But from a research standpoint, and I am biased as an active researcher for SWOG, imagine where we would be without men like David. The following drugs would probably not be available: docetaxel, cabazataxel, abiraterone acetate, enzalutamide, alpharadin, and so on. And men would probably be still taking cabozantinib (XL-184) blindly thinking it could help them. Or doing docetaxel in settings that it simply does not help (Soon to be announced).
I miss David still. His sense of humor, and his passion for life and love of his son Brad and wife Mary. It's all still fresh in my memory. And I miss his courage that he used to pave the road ahead ~ because he hoped if it didn't help him it may help others, particularly his son if such a dx could happen to him in the future.
Note: I called myself a researcher as I am actively a patient advocate. My colleagues told me to address myself that way because I have actively questioned the science and trials we work on and this has led to changes in the trials to help make them more efficient or more palatable to those that would join the trials. We need participation in clinical trials. We need to answer tough questions and reduce guess work in prostate cancer treatment. And I lend all respect to those men willing to partake in trials. And getting out of the prostate cancer setting ~ I respect all participants in cancer clinical trials regardless of the disease site.
I write to share a particular thought he had that I considered profound. Many guys are treated for prostate cancer and suffer side effects that affect urinary incontinence or ED among other things. David was so detached from that discussion. He was diagnosed with a PSA at 271 and mets all over. He would have gladly traded that dx for a treatment that cured him or gave him more time with Brad and Mary. In particular he was hopeful to see his son graduate and he was not able to fulfill that wish. Urinary incontinence or ED were not anything he would not have been happy to deal with in trade for that experience.
This is perfectly reasonable to me. Men with metastatic prostate cancer are many times terminally ill. The elephant in the room is not treatment side effects as the clock keeps ticking. Many times treatment decisions are not easy to make for men like David. He was trying everything he could including inclusion in clinical trials which failed to produce a treatment. XL-184, TAK700, and others, just didn't work out in trials to date. We never knew if he was in the treatment or control arms but his willingness to be a part of the trials was the type of guy he was. If it didn't work for him at least there would be data gathered that would help all metastatic patients in the future.
I occasionally see advocates actively trying to talk similar patients out of clinical trials because of the risk of not receiving a treatment or drug. This I find sad. From a personal patient basis, it understand it. But from a research standpoint, and I am biased as an active researcher for SWOG, imagine where we would be without men like David. The following drugs would probably not be available: docetaxel, cabazataxel, abiraterone acetate, enzalutamide, alpharadin, and so on. And men would probably be still taking cabozantinib (XL-184) blindly thinking it could help them. Or doing docetaxel in settings that it simply does not help (Soon to be announced).
I miss David still. His sense of humor, and his passion for life and love of his son Brad and wife Mary. It's all still fresh in my memory. And I miss his courage that he used to pave the road ahead ~ because he hoped if it didn't help him it may help others, particularly his son if such a dx could happen to him in the future.
Note: I called myself a researcher as I am actively a patient advocate. My colleagues told me to address myself that way because I have actively questioned the science and trials we work on and this has led to changes in the trials to help make them more efficient or more palatable to those that would join the trials. We need participation in clinical trials. We need to answer tough questions and reduce guess work in prostate cancer treatment. And I lend all respect to those men willing to partake in trials. And getting out of the prostate cancer setting ~ I respect all participants in cancer clinical trials regardless of the disease site.