Diagnosed with Leukemia? Are You Sure?

April 3, 2013
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The headlines each day bring more good news about progress in treating blood cancers. We now know more than ever before about leukemia, lymphoma, myeloma and other disorders. There used to be a fairly standard approach to treatment, but that’s changed too. There are many subtypes and new therapies, new drug combinations, various clinical trial options and even uses of transplant vary depending upon the individual patient situation. One thing has not changed however: Receiving an accurate diagnosis at the start is absolutely critical.

The headlines each day bring more good news about progress in treating blood cancers. We now know more than ever before about leukemia, lymphoma, myeloma and other disorders. There used to be a fairly standard approach to treatment, but that’s changed too. There are many subtypes and new therapies, new drug combinations, various clinical trial options and even uses of transplant vary depending upon the individual patient situation. One thing has not changed however: Receiving an accurate diagnosis at the start is absolutely critical.

Susan O'Brien, MD

Susan O’Brien, MD

Starting off with the wrong treatment could 1) Not be effective and/or bring needless side effects 2) Make things much worse and 3) Preclude the patient from a better approach, as in a trial. This means even doing a lot of online research to become educated may not be enough. It’s a tough time for patients and caregivers because a well-meaning general oncologist or hematologist may be saying treatment is needed immediately. Sometimes that is true, but often there is time to get to a renowned specialist at a center where they see multiple types of blood cancers all the time and also research them. As is often said in cancer care, “Your first shot is your best shot.”

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The other day I received an email from a Patient Power visitor who was sparked to write after we featured a new interview with the specialist he says saved his life, Dr. Susan O’Brien from MD Anderson Cancer Center in Houston. Jim (last named withheld by request) explained how, in 1998, he was told by three Chicago doctors he had a serious version of chronic lymphocytic leukemia (CLL) and should prepare himself to have a stem cell transplant.

Jim didn’t accept that and went searching online, where he found the CLL patient community on acor.org. ACOR, for those not familiar with it, is the Association of Cancer Online Resources, founded in 1996, and is made up of communities of patients with many types of cancers. The leader of the CLL group back then, GrannyBarb Lackritz, told Jim the same thing she told me. “Get yourself to a CLL specialist. Get another opinion.”

Jim did and saw Dr. O’Brien who, after pondering his case, decided he had something different: Splenic Lymphoma with Villous Lymphocytes (SLVL) – obviously not something a community oncologist would see every day! This rare disorder comprises less than one percent of lymphoid neoplasms. SLVL is often confused with CLL and sometimes with hairy cell leukemia.

Jim had no chemo and no transplant. Instead, he had a splenectomy and his health was pretty good for the next 11 years. In 2009 Jim needed Dr. O’Brien again. He had pain, large lumps in his groin and high blood counts. This time it was “marginal zone lymphoma.” Treatment was chemo, an allogeneic transplant from his brother, and more radiation. Jim came to love Dr. O’Brien – again – and his transplant doctor, Elizabeth Shpall, also with MD Anderson. He affectionately calls them “Velma and Roxy,” after characters from the play and movie, “Chicago.”

Elizabeth Shpall, MD

Elizabeth Shpall, MD

Jim told Dr. Shpall his dream was to ski again. As a skier herself, she said she understood and assured him he would do that. I’m happy to report that since June of 2010 Jim has been working and leading a normal life that includes gardening and bicycling with his partner, Gary, and yes, skiing recently for a week in Vail.

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So think about this: Jim’s cancer journey began 15 years ago and now he is living well. Would he have had this result if he had started off with the wrong diagnosis? I do not think so. For sure, there are people with “classic” cases of a leukemia that most hematologist/oncologists know well, but from the patient’s perspective it is critical to feel confident you have the right diagnosis and the most up-to-date treatment plan. There’s too much risk if the initial diagnosis is wrong. And, adding to that, patients also need to make sure clinical trials are part of the treatment option discussions, even during the initial stages. In these times when things are changing fast, you should hear whether you might be a candidate for what could be “tomorrow’s medicine” today – even if the doctor who is telling you does not have a trial available at his/her center.

Jim’s special person, Dr. O’Brien, is tops in our book too. That’s why you will find new interviews with her, and other top blood cancer specialists, on Patient Power. Knowledge was definitely the best medicine for Jim 15 years ago, and that is still true today.

Wishing you and your family the best of health,

Andrew