Advice to New Patients

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A copy of a message from David Arenson to a new patient.

 

I was also diagnosed with CLL in September. Making a long story short, I found a few things invaluable in coming to terms with it, and would recommend this to all CLL newbies:

The best source of information on CLL, and a godsend to patients everywhere, is clltopics.org. There are literally dozens of articles on dozens of subjects, and there are introductory articles you can start with. Take your time and start reading. It may seem technical at first, but you'll want to know this stuff. The site keeps track of the latest trends and thinking. The more you learn about what is being done today, the more optimistic you will become about the future.

Don't expect oncologists to do your thinking for you. They are very busy people, and many are not specialists in CLL, and are way behind the learning curve in a disease where information changes almost by the day. Always get a second opinion, at a second office. Ask here for recommendations for CLL specialists in your state. (And be aware that CLL specialists may differ in their approach -- places like MD Anderson are more chemo heavy than places like the Mayo Clinic, for example.)

Do give yourself plenty of time to come to terms with what treatment options are in front of you. There is almost never an "emergency" need to treat CLL. It is important that, when you do start treatment, it is a treatment that you *believe* in. Make time for yourself and take the time to come to terms with this, no matter what your doctor/spouse/child/whoever says.

Speaking of beliefs -- the first place I started my battle with CLL was mental. Studies have conclusively shown that patients with a hopeful, fighting attitude live longer and do better when treated. I found three books to be very useful: "Getting Well Again" by O. Carl Simonton, et al; "Love, Medicine and Miracles" by Bernie Siegel; and "50 Essential Things to Do When Your Doctor Says It's Cancer" by Greg Anderson. The last one is a thin book with good advice, and has one thought that saw me through some tough moments: "Panic is a projection that is not real. We are not just our fears. Our fears do not necessarily determine our future. This is significant." These books also deal with practical issues of choosing doctors, etc.

Finally, do take time to smell the roses, so to speak. You don't have to think about CLL every waking moment. A silver lining in all this for me was putting in perspective what is really important. Despite having CLL, I am a happier person today than I was the day before my diagnosis. And no one's more surprised than I am.
 

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