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