EDUCATING OURSELVES

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Contents:
Getting a good basic education on lymphoma
Beyond the basics
NHL lists

How to get a good basic education on lymphoma

* Small booklets on lymphoma are available from the NCI (call 1-800-4CANCER) and from the Leukemia Society of America (1-800-955-4LSA). The former also makes available an excellent booklet on the workings of the immune system called The Immune System -- How It Works, published in collaboration with the National Institute of Allergy and Infectious Diseases. (The 4CANCER stuff will arrive within days, but the LSA requests take weeks and even months to get to you.) The book Choices by Marion Morra and Eve Potts (1994), commonly available in bookstores and libraries, has a good chapter on Lymphomas and Multiple Myelomas. Another good basic chapter is in Everybody’s Guide to Cancer Therapy, by Dollinger, Rosenbaum, and Cable, 3rd revised edition, 1998. The New Cancer Sourcebook edited by Allan R. Cook (1996), available in some library reference sections, also has good basic information.

* Join the lymphoma societies -- you will receive their newsletters and notices of any future educational materials. See the lymphoma societies page for more information -- the CFL has just published a patient information booklet.

* Ask your oncologist a lot of questions, and keep notes.

* The Plus Program: Non-Hodgkin’s Lymphoma Education Manual. Published by Amgen. Free. (Call 1-888-758-7776, or write to The Plus Program, c/o MMM, 1601 Lincoln Avenue, Vancouver, WA 98660-2758.) This is a thick loose leaf notebook, and contains a good amount of basic information about lymphoma, as well as some practical survivorship issues. There is also a glossary section, and several pages of resources such as books, organizations, magazines, and useful Web sites. Highly recommended. They also publish a companion booklet for friends and family members, free for the asking.

* Adult Non-Hodgkin’s Lymphoma, State of the Art Statement. From the PDQ Cancer Information Database. Revisions are frequent, depending on developments in the field. You can request these in the patient version (simpler language) or the physician version (if you are comfortable with medical lingo).The file can be obtained from 4CANCER, from the PDQ database online (http://cancernet.nci.nih.gov/), or by fax (dial 301-402-5874 from the telephone on a fax machine and listen to recorded instructions). A useful and up to date information source.

* Current Issues and Controversies in the Management of Non-Hodgkin’s Lymphoma. Constance Engelking, editor. Published by Triclinica Communications, 1740 Broadway, New York, NY 10019. Last revision in 1996. (No price listed.) This is an educational monograph directed at onconurses. It is succinct (only 39 pages), clear, lists areas of controversies, and has a useful appendix explaining all those crazy abbreviations for treatment drugs, like CHOP, CVP and many others. A very good overview, updated every few years.

* If you have Internet access, browse lymphoma Web sites, or join a lymphoma list. And if you are a member of AOL or the other large online services, look for their cancer forum. There is probably a lymphoma room there somewhere.

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Beyond the basics

* Get a medical dictionary.

* Lymphomas chapter in Cancer: Principles and Practice of Oncology, Fifth Edition. Edited by Vincent DeVita, Jr. et al. Lippincott, Philadelphia, 1997. This is a key oncology text, commonly available in medical libraries. The chapter covers a huge amount of information in its 60+ pages. The book contains other chapters on rare and cutaneous lymphomas. This book is updated every few years.

* The Non-Hodgkin's Lymphomas, edited by Ian Magrath, 2nd edition, 1997, is the most up to date text specifically on NHL. It is technical and available in some bigger medical libraries. It covers topics like the following: concepts and controversies in lymphoid neoplasms, the historical perspective, chapters on many of the various cell types, chapters on treatments including biological response modifiers, ideas for future trials, and many others.

* Learn to do your own research in medical libraries or online. Ask a reference librarian for help. Index Medicus is a manual searching tool which is unfortunately only available through year 1993. And online, look for example for Medline or CancerLit. Steve Dunn’s CancerGuide (a highly recommended resource itself) has several pages on learning to do one's own research, and on using medical libraries. Or you can hire a medical research service to do some research for you. Share what you find with others.

* Write down what you have learned in a form accessible to others, and hand it out in your support group, or post it to a list, a web site, or start your own.

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NHL lists on the Internet

There are several lists for patients, family members and other interested people. This is the way a list works: there is a computer somewhere that hosts the list. People who join send letters to this list, and the computer (called list server) sends copies of each letter to all the subscribers. Then others can respond, or correspond privately about each topic raised.

The most general list is the nhl list. The address for sending submissions is nhl@jubjub.wizard.com and to subscribe, send mail to nhl-request@jubjub.wizard.com. Put the word SUBSCRIBE into the body of the message, and leave the subject of the message blank (on AOL, use the hyphen). This list is very support oriented, many people there are undergoing treatments or supporting family members who are, and there is a great deal of social chat going on. The daily load of messages is considerable. The subscriber can choose to receive the mail as a daily digest, in one installment.

The nhllow list is information oriented, and specifically for low grade lymphomas, although much of the information posted is useful for all lymphomas. Social chatting is not allowed so that the message load remains manageable. The latest research and news find their way to the list, and alternative therapies have also been discussed. (Unfortunately, the owner of the list was harassed with hate mail by opponents of alternatives and has requested that only mainstream information be posted.) The address for sending messages is nhllow@egroups.com. To become a member, follow these directions:

To SUBSCRIBE, send a message to nhllow-subscribe@egroups.com

To UNSUBSCRIBE, send a message to nhllow-unsubscribe@egroups.com

(That is all you have to do! NO Subject line, NO message etc.)

Another list has been started recently for discussions of alternative therapies etc. To subscribe, send an empty message to nhl-other-subscribe@eGroups.com.

There are also cell-type lists. For mantle cell lymphoma, the list to join is mantlecell@ucsd.edu; to become a member, send the words ADD YOUREMAIL MANTLECELL to listserv@ucsd.edu. (Substitute your own email address for "youremail.") The message load is very manageable at present, patients post stories of their experiences with the disease, and with various treatments, and there are several oncologists frequenting the list who have a special interest in MCL and can provide helpful information on timely topics. This list has no archives at present.

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Compiled by Vera Bradova © 1998
Updated 10-10-1998
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