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Alert Number 39
Date: August 24, 2024
A few months ago we reviewed on our website the state-of-the-art best practices followed at the Mayo Clinic for diagnosing and treating CLL patients. You can look up our review under What You and Your Oncologist Need to Know about CLL. I am glad to report the full text of the Mayo article is now available free of charge, the link is given below.
There is a certain time lag between when Best Practices are formulated at leading institutions such as the Mayo Clinic, and when they percolate down to the local oncologist level. I have heard from several of you that your local healthcare providers are not always familiar with these practices. No doubt these Best Practices will become the norm several years from now. But that will be small consolation to you or your family if you are not diagnosed properly or not treated with the best available therapy choices right now. It is up to you to short circuit that delay, you have most "skin" in this game.
Another issue is coverage discussions with your insurance companies. There too having a Best Practices article such as this from the Mayo Clinic has real credibility, you may want to print this out and have it available in your own files. In particular, I would like to draw your attention to the use of FISH as diagnostic testing, and prophylactic use of intravenous immunoglobulin (IVIg) to prevent infections. Insurance companies and local oncs seem to balk at this, probably because they are not familiar with interpreting the FISH information and IVIg is expensive. You can find much more information on FISH as diagnostic and prognostic tool on this website under FISH-ing for Answers. You may want to refresh your memory by reading this article as well as articles such as What Type of CLL Do You Have?. The CLL FISH panel is now commercially available. There is no excuse for you not having access to this important and necessary prognostic information before you make therapy choices.
Once again, you need to be your own best advocate. It is up to you to get the relevant information to your doctor. You may find that the path of least resistance is much better defined with the Mayo name behind you. Notice the Mayo article is clearly addressed to "Clinicians", another word for the local docs that do the actual delivery of healthcare for the majority of patients.
Be well,
Chaya
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Concise Review for Clinicians
Current Approach to Diagnosis and Management of Chronic Lymphocytic Leukemia
Tait D. Shanafelt, MD, and Timothy G. Call, MD
Mayo Clinic, Rochester, MN
NOTICE: This page from the Topics Alert archive was originally emailed to subscribers of Topics Alert, a free service of CLL Topics Inc. If you are not a subscriber and you wish to receive email Alerts, please register at the Topics Alert subscription page. The content of this page is intended for information only and it is NOT meant to be medical advice. Please be sure to consult and follow the advice of your doctors on all medical matters.
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