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!
Andrew
I work with Dave and agree, he is a great guy. The whole time he was being treated, nobody knew about it at work. This is impressive, as it is a small shift with a small town feel to it. For him to handle his ordeal in private is a testament to his strength.
Thank you for writing the way you did. In many cases, it is up to the patient to do their own research and decide what is best for them.
Debbie
My husband has CLL and has had treatment for 7+ years. He sees a CLL expert and a BMT expert at a University hospital here on the west coast. Both doctors encouraged and supported my husband in seeing other doctors. He has been seen by Dr. Rai (NY), Dr. Khouri (MD Anderson), Dr. Maloney (Hutch), City of Hope, and Dr. Kipps at UC San Diego. The doctors have worked together assessing my husband’s case and suggesting various treatment options. Not on of these doctors had “bad mouthed” anyone (at least to us publically). Please know we have met “arrogant” doctors and the best way to deal with these doctors, in my opinion, is to know your stuff!
We did decided to stay with the doctors at the University hospital on the west coast, but who knows we may be on the road again to find the all allusive cure.
Wishing you all good luck and good health in 2010~
Great information and thanks for the split. I must keep in touch with this blog.
Dr. Keating treated me for CML for years until I was able to get into a CML trial. He is one of the kindest doctors who enjoys laughing, even if the joke is on him. Then you must know Alice, his nurse. I have nothing but praise for Dr. Keating and his staff. All of his patients felt the same way.