Update on Dr. Steve O’Day and The Angeles Clinic

I'm sorry if I led you to think that I did not like Dr. Hamid.  I stated, "Dr. Hamid has over a decade of Melanoma experience that happens to be very patient care oriented."  Unfortunately I have had to try a lot of clinical trials to stay alive these past six years.  I've learned the hard way that sometimes I need to go to the drug, regardless of the doc or the location.  The Braf inhibitor, Vemu, that I am on right now turned a very critical situation around in seven days.  When I talk about options, I mean access to drugs.  The fact that Dr. H is "very patient care oriented," with me, is truly wonderful and appreciated.  You can also bet that when my entire body blew up in a rash and fever ten days out on Vemu, my family was thankful that Dr. H immediatley called in response to my 5am text.  First and foremost, however,  I needed him to have access to the Roche/Genentech expanded access trial when only three sites were open this past January.  In fact, I was the first person on that trial in the country.  Keeping me alive and very strong was even more important because my son had suddenly been diagnosed with a life threatening disease of his own that has no cure.  Dr. H could have questioned my ability to follow the trial protocols but he did not blink. He buckled down with me and we pushed through together.  But again, without the drug this would all be for nought.

I've been told I've got several months to live, more times than my kids care to remember.  My survival has been due in some part to intelligent and compassionate docs but in larger part to a treatment sequence obtained from eight institutions that my body has endured and responded to.  In my experience, however, no treatment has had the degree of impact and response speed of Vemu. 

That said, my real intent was to share my observations of The Angeles Clinic due to Dr. O'Day's extended leave.  Does the clinic have some annoying hiccups, you bet it does…it comes with the imperfect territory of trying to save lives.  But from my six-year perspective, the "bones" of this clinic so to speak are very much in place to give me a good shot at seeing my daughter graduate from high school next June.

If anything perhaps our dialogue can remind us that there are many ways to advocate for the care that you feel is best for your needs.

I'm sorry if I led you to think that I did not like Dr. Hamid.  I stated, "Dr. Hamid has over a decade of Melanoma experience that happens to be very patient care oriented."  Unfortunately I have had to try a lot of clinical trials to stay alive these past six years.  I've learned the hard way that sometimes I need to go to the drug, regardless of the doc or the location.  The Braf inhibitor, Vemu, that I am on right now turned a very critical situation around in seven days.  When I talk about options, I mean access to drugs.  The fact that Dr. H is "very patient care oriented," with me, is truly wonderful and appreciated.  You can also bet that when my entire body blew up in a rash and fever ten days out on Vemu, my family was thankful that Dr. H immediatley called in response to my 5am text.  First and foremost, however,  I needed him to have access to the Roche/Genentech expanded access trial when only three sites were open this past January.  In fact, I was the first person on that trial in the country.  Keeping me alive and very strong was even more important because my son had suddenly been diagnosed with a life threatening disease of his own that has no cure.  Dr. H could have questioned my ability to follow the trial protocols but he did not blink. He buckled down with me and we pushed through together.  But again, without the drug this would all be for nought.

I've been told I've got several months to live, more times than my kids care to remember.  My survival has been due in some part to intelligent and compassionate docs but in larger part to a treatment sequence obtained from eight institutions that my body has endured and responded to.  In my experience, however, no treatment has had the degree of impact and response speed of Vemu. 

That said, my real intent was to share my observations of The Angeles Clinic due to Dr. O'Day's extended leave.  Does the clinic have some annoying hiccups, you bet it does…it comes with the imperfect territory of trying to save lives.  But from my six-year perspective, the "bones" of this clinic so to speak are very much in place to give me a good shot at seeing my daughter graduate from high school next June.

If anything perhaps our dialogue can remind us that there are many ways to advocate for the care that you feel is best for your needs.

I'm really sorry that your experience was less than optimal.  I am also saddened that this imperfect healthcare environment has put so much pressure on all of us.  For every doc that I've heard great things about, I've also heard negative things.  I don't know what external demands were impeding Dr. Hamid on the day of your appointment.  I do know that my experiences at seven other institutions, have taught me that all of these guys are under a lot of pressure.

That doesn't justify what happened to you but it does remind me that some times we have to step out of our comfort zone and tell a doc that we are making a decision that our life depends on and that we need more clarification so that we have the information necessary to make such an important decision.  I've yet to have a doc not sit down immediately after I make that statement and give me the time I need.  This same approach works really well with Study Coordinators.

I'm sorry you didn't get the chance to meet Dr. Hamid under better circumstances.  My experience has been that he is a good communicator with very thorough analytical skills and a quick sense of humor…who secured access to the drug that has kept me alive post three bouts with brain mets, when other institutions could not. 

As for the money that is being made, ten years ago I would have agreed with you.  Now, however, oncs are just as likely to lose money on a trial as make money.  I am always surprised that effiencies I take for granted in business are often foreign to medical offices.  I am also surprised how many times I have watched a clinic gear up for a trial only to have it closed down even before accrual, leaving the onc with the overhead expenses.  Perhaps your experience has been different but in my six patient years I have yet to meet a melanoma specialist who works under 12 hours a day.  15+ is more like it and they are often putting their personal lives on hold to do it.  At this point, I will never begrudge them whatever money they're making.  I am just greatful that they are willing to spend their time with this orphan disease that only kills 8,000+ a year instead of focusing on diseases that affect a much larger patient population.

All this aside, I truly hope that you've found a doc who is a good fit for you and can offer an effective treatment sequence.  All of us deserve no less.

I'm really sorry that your experience was less than optimal.  I am also saddened that this imperfect healthcare environment has put so much pressure on all of us.  For every doc that I've heard great things about, I've also heard negative things.  I don't know what external demands were impeding Dr. Hamid on the day of your appointment.  I do know that my experiences at seven other institutions, have taught me that all of these guys are under a lot of pressure.

That doesn't justify what happened to you but it does remind me that some times we have to step out of our comfort zone and tell a doc that we are making a decision that our life depends on and that we need more clarification so that we have the information necessary to make such an important decision.  I've yet to have a doc not sit down immediately after I make that statement and give me the time I need.  This same approach works really well with Study Coordinators.

I'm sorry you didn't get the chance to meet Dr. Hamid under better circumstances.  My experience has been that he is a good communicator with very thorough analytical skills and a quick sense of humor…who secured access to the drug that has kept me alive post three bouts with brain mets, when other institutions could not. 

As for the money that is being made, ten years ago I would have agreed with you.  Now, however, oncs are just as likely to lose money on a trial as make money.  I am always surprised that effiencies I take for granted in business are often foreign to medical offices.  I am also surprised how many times I have watched a clinic gear up for a trial only to have it closed down even before accrual, leaving the onc with the overhead expenses.  Perhaps your experience has been different but in my six patient years I have yet to meet a melanoma specialist who works under 12 hours a day.  15+ is more like it and they are often putting their personal lives on hold to do it.  At this point, I will never begrudge them whatever money they're making.  I am just greatful that they are willing to spend their time with this orphan disease that only kills 8,000+ a year instead of focusing on diseases that affect a much larger patient population.

All this aside, I truly hope that you've found a doc who is a good fit for you and can offer an effective treatment sequence.  All of us deserve no less.