More and more people are telling me their own Powerful Patient stories. I love it!
I heard this one at lunch today in Las Vegas as I reconnected in-person with CLL friend Dave Garcia, 50, a veteran pit boss at the famous Bellagio casino.
Dave and I met via the Internet seven years ago after he was diagnosed with CLL. He searched for information and found my story of being in a clinical trial at M.D. Anderson Cancer Center in Houston. I told him to get on Southwest Airlines and fly to Houston to be evaluated there after he was being painted a terminal picture by his doctor in his hometown.
Today he told me for the first time “the rest of the story,” as Paul Harvey used to say on radio.
Dave had already visited an elite cancer center on the west coast. I’ll skip saying which one to avoid tarnishing their reputation because of one doc and one encounter told to me second hand.
According to Dave, the doctor looked him straight in the eye and instructed him in very direct terms not to go to M.D. Anderson and above all, not to go to Dr. Michael Keating, a world renowned CLL specialist there. She told him the right plan was only to get a bone marrow transplant right away and to do it at her institution.
Dave wasn’t ready for that big decision and the negative comments about another leading institution and expert struck him wrong. He flew home to Vegas, searched some more, called me and headed to Texas to the “big bad” M.D. Anderson and the “evil” Dr. Keating (forgive me, I am just having fun with this).
As you know, of course, I was treated by Dr. Keating and feel he saved my life. So, of course, I have a bias.
Now back to the story, there’s more. Dave shared with Dr. K the bad mouthing from the west coast “competitor.” Dave says the full professor just chuckled. Other doctors, jealous of his reputation, have thrown brickbats at him for years. Although he’s from Australia, he and so many other docs at M.D. Anderson are seen as cancer “cowboys.” Who treat cancer too aggressively and, while they show off impressive results from clinical trials, others complain they have trouble reproducing the results.
Dave went on to have the same treatment I had: fludarabine, cyclophosphomide, and rituximab. Like me it worked – for Dave, for 6 years. It should also be noted that this combination is now expected to be approved by the FDA this Fall. Hundreds if not thousands of patients have already benefited. I sure did, with a continuing remission, thank God, more than 9 years after beginning treatment.
And what happened to the bone marrow transplant approach for previously untreated patients? That approach was abandoned. I turned my back on it when it was suggested to me by a patient from Boston as Dave did with the arrogant university doctor from California. By the way, I have never heard of that doctor as a CLL expert.
Dave shared one last bit information with a grin as we finished up lunch today. “I called the west coast doctor back after I achieved my remission at M.D. Anderson. I was still livid at what she had said. I sounded off, she listened and I hung up.”
Dave did need treatment again a few months ago. The same medicines were repeated and knocked the cancer back. He continues to observe and serve the high rollers at the Bellagio and looks great.
If he needs more care he’s heading to Texas. He remains not too fond of California medicine.
One last perspective: there are certainly rivalries between leading institutions and leading docs. But no one has the right to insist you limit your options. And it is just plain unprofessional to denigrate highly respected peers. One doctor can question the science and touted by another doctor and suggest a patient should investigate further. But it’s arrogant to insist it’s my way or the highway.
Dave knew this was wrong and so do you.
By the way, Dave, Thanks for lunch!
Wishing you and your family the best of health!