Innocent citizens, lured by the promise of a free weekend or a complimentary off-brand television, have been known to voluntarily subject themselves to what is called a timeshare presentation. This lasts two or three hours and is, to my way of thinking, the second or third circle of hell. It involves a tour and a video, usually featuring a has-been TV star extolling the virtues of the timeshare dream while standing on a sandy beach. The worst part is the conclusion, sitting with a high-pressure salesman (or “closer”), whose job it is to get you to sign on the dotted line before you leave that day. The salesman will be very friendly, and you will be plied with free hors d’oeuvres.
While most people just take the television and run, there are those who get swept up in the moment, who see themselves skiing in Tahoe and snorkeling in Hawaii and clinking wine glasses in Paris. They get out their checkbooks and sign on the dotted line. Then a small bottle of champagne is uncorked, the sound of which is a signal for all the salespeople in the room to applaud. Those who make the "right" decision are thus rewarded with the approval of the tribe.
Fortunately, laws have been passed to protect those who wake up the next morning, as if with a bad hangover, and say "What the hell was I thinking of?" If, within three days, you change your mind, the law lets you out of the deal with no penalty.
That, my friends, is the three-day rule. Now, let’s see how it applies to CLL.
Speaking of money, I will now save you $30,000
Let’s say you are at the thinking-about-treatment stage. You go to see a doctor -- could be the local oncologist you’ve been working with for years, could be a big name at one of them fancy CLL Consortium places.
You visit with the doctor, and the doctor says; “OK, you can get a nice remission with Treatment X.” or “You’re in luck, Here’s this new clinical trial we’re running and I can get you in.” Or some such. And the process can be started that very day, the scheduling, the insurance paper-filing, and so on. Hey, they might even get you in the chair tomorrow! Problem solved.
Or is it?
If we have learned anything about CLL, it is that individual cases must be finessed with the greatest of care. It is not just me saying this. Here is a quote from Dr. Michael Hallek, whose excellent paper CLL: First-Line Treatment is one of the highlights of this year’s ASH conference:
“With the potential of potent chemoimmunotherapy regimens, choosing the right treatment for a patient with CLL has become a task that requires skill and experience.”
And what is maddening about CLL is that even the experts can disagree. People of skill and experience may offer you different options, depending upon what research their institution is pursuing at the moment, or what clinical trials they need people for, or based upon honest differences of opinion.
For example, if you are a patient with a mixed prognosis heading toward treatment for the first time, I can guarantee a 90% probability that the following will happen if you visit the following Consortium institutions, which would run you at least $30,000 out of pocket if your insurance won’t pay. (I am not psychic; these observations are based on reports from fellow patients during the past year or so.)
MD Anderson will recommend something with “FCR” in the title.
Ohio State will suggest RF.
The Mayo Clinic will suggest PCR.
UC San Diego will recommend R + HDMP or an immunotherapy trial such as AT-101 or 17-AAG.
(Now, if I have just saved you some money, please don’t run out and buy a timeshare.)
Make like Elvis -- leave the building!
So here’s my advice, which runs counter to human nature, but which is probably one of the best pieces of advice I can ever give you (and again, I am not psychic -- this is based on the experiences of many patients, including myself): Politely thank the doctor, tell him or her that you want some time to think about it, and leave the office without scheduling or arranging for the suggested treatment. Even if the doctor is famous. Even if you really like the doctor.
Give yourself at least three days to learn more about the treatment: Google it, visit CLL Topics and do a site search for it, look in the ACOR archives for posts on it. E-mail your fellow patients, post to patient lists. Get a second opinion from another doctor. Examine the side effects, the track record, how the different drugs may affect people with your cytogenetics or other conditions that may complicate your case of CLL.
Then go for a walk in the woods, or on the beach, or do whatever it is you do to get in touch with your calm, centered, intuitive self. On all levels, scientific and medical, mental and emotional and spiritual, chew on the treatment. Does it feel right?
Then, and only then, should you decide what to do.
But I want it to be over!
I said this runs counter to human nature, and I know all the arguments. They are so very, very tempting. I have been tempted by some of these myself:
I have cancer. My counts are rising. My lymph nodes are popping up. This is an issue of such magnitude that I cannot afford to wait.
The doctor is an expert. I am an idiot compared to the doctor. If I don’t agree to his suggestions, he will think I am stupid.
I am a nice person and I don’t want the doctor to think I am a pain in the ass. He is a nice person and I want to please him.
I will lose the doctor’s trust by being uncooperative. He will throw me out of his office and I will be barred forever from his expertise. The security cameras in the lobby will be programmed to recognize my face and a red light will go on somewhere if I ever enter the building again.
The doctor says that this new treatment is working so well that it might even cure me, or come close. I know this disease is supposed to be incurable, so how can I pass up a chance like that?
I have taken time off from work and have flown/driven/ridden an uncooperative mule all this way to see the doctor. It is costing me a lot of money to stay at the Hyatt/Ramada Inn/Motel 6. I want to get my money’s worth from this trip. If I go away empty-handed, so to speak, I have wasted my time. I can’t keep doing this.
My friend/family member/local doctor/fellow CLL patient said this is the place to go. I do not want to disappoint them. Others have been happy with their treatment here. What makes me so “special” that I shouldn’t be?
If I am treated here, I am getting “the best.” People of my accomplishment/wealth/intelligence/incredible beauty deserve to get the best.
I just want it to be over. I’ve been watching and waiting and worrying for a long time. If I have to do one more search on the internet or deal with one more unexpected complication or confusing concept, I will scream.
The end game
There’s an old saying among dieters: “A moment on the lips, a lifetime on the hips.”
This applies to chemotherapy, too. It has consequences, for good or ill. It can help for a long time, or for a while, or it can make things worse, even blow your chances for responding to a better treatment.
Remember what Dr. Hallek said in that one sentence I quoted: Today's chemotherapy regimens are "potent." Their administration requires "skill and experience." This serves to remind us that there is the practice of medicine and there is the art of medicine, and that they may be two different things. Even a doctor with the biggest practice, and the biggest reputation, may not be artful; I believe that the wise patient is the one who walks away. The big secret with timeshares, despite the pressure to commit on the day of the presentation, is that you can always go back the next week or the next month and make the purchase. The same is true when it comes to treating your CLL.But if matters of ego, or of ostrich-ism, are more important to you than your survival, then by all means make a snap decision, get swept away in the moment, uncork a bottle of champagne, and hope for the best. Maybe it will, indeed, work out.
Just remember that there is no three-day law to protect you, nothing to turn back the clock once a drug has entered your veins. I know cases of people who have regretted jumping the gun on treatment, who got swept along and wonder, after the fact, if they did the right thing. Perhaps, in fact, they did -- but it is not pleasant to have such doubts.
This is life and death, not buying a timeshare. There are no guarantees, of course, even after you have done all the right things, that the treatment you choose will ultimately be successful, or the best possible thing for you.
But the more you think about it, the harder you keep on trying, the better the odds.
The fight against CLL is all about bettering the odds.
Take the three days.
Michael Hallek’s article CLL: First-Line Treatment nicely sums up the state of CLL treatment today and where things are headed. This is well worth a read, whether you are considering treatment or not: