It was a real busy Friday, but a nice one. I spent the whole day with my wife, shopping for groceries, going to craft stores, and then out to dinner with some friends we had not seen for over five years. Like usual, the weather was near perfect, however it was a bit cooler than usual, only high of 76 degrees. My wife wore her jacket, and I wished I had too, but didn’t, thinking it would get warmer during mid-day.

The diagnosis of CLL is typically made by the immunophenotype, which is a flow cytometry test (Flow Cytometry is a test that can be used to measure the amount of DNA in cells). This test is now widely used in the characterization of many different human cancers, with the information used by physicians to determine how well a cancer may respond to a particular therapy. And CLL has typical markers that are shown here, that are expressed on the cell. And it’s important, if you’re out there and you’ve had CLL for a long time, to be sure this test has been done. Because sometimes this test wasn’t done in the past and there are a lot of things that can look like CLL that aren’t CLL, such as mantle cell lymphoma and other types of lymphomas. So I would encourage if you haven’t had these done, this is something that should be done for all CLL patients.

I would like to mention that there is a big distinction to be made to what is CLL versus these other diagnoses, such as Small lymphocytic lymphoma or monoclonal B-cell lymphocytosis. Small lymphocytic lymphoma is essentially having blood markers, the immunophenotype, consistent with B-cell CLL, but not having a lot of disease in the blood. And typically these patients that have small lymphocytic lymphoma will have a low blood count, the flow cytometry findings of CLL, and lymph nodes that are palpable. And often they’re referred to a lymphoma doctor. But it’s important to realize that this is really the same disease as CLL, it has the same biology, the same natural history and the same treatment of CLL. And really this is just where the disease is at. I would suggest that if you can, find a Hematology/Oncology physician. Thankfully my doctor is one, and I must say, he knows his stuff.

CLL patients at diagnosis, usually the majority being asymptomatic. They’re not having symptoms and the disease is picked up from blood tests or a work-up for something else, a kidney stone (It was a kidney stone that caused my SLL/CLL to be picked up), or an infection, where the white blood cell count is noted to be elevated.

When a patient, after they’ve had the diagnosis established, hear the word leukemia, along with their family members, become very scared, and why not, it is a very scary disease. Many have known or know somebody that had leukemia and passed away very quickly, and in turn, expect the same. Fortunately, CLL patients do better than those with other types of leukemia, but unfortunately, because of this fact , sometimes a bad term is said, and probably some of you have heard it, well, this is a good leukemia. And that’s why I say, there’s no good leukemia. If somebody tells you that’s a good leukemia, I would encourage you to correct them. There is no such thing as a good cancer.

I have learned much about my disease from the information offered by the Leukemia and Lymphoma Society. The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. LLS is the world’s largest voluntary health agency dedicated to blood cancer. LLS funds lifesaving blood cancer research around the world and provides free information and support services.

Their key priorities will ensure that: The Leukemia & Lymphoma Society helps blood cancer patients live better, longer lives.

  • Advance the diagnosis and treatment of blood cancers through continued funding of academic research, the therapy acceleration program and other special initiatives
  • Proactively establish a research agenda and direct a portion of research spending to specific areas of unmet medical need for leukemia, lymphoma & myeloma
  • Participate directly in blood cancer therapy development by expanding research beyond academic collaborations and biotech partnerships to include pharmaceutical companies and/or venture capitalists.

I am not advertising for the LLS, just stating the fact that those who work, and or volunteer for them, really care about we, who fight this fight daily.

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