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Information geared to physicians is more useful and detailed than that written for patients.


Textbooks are out of date almost as soon as they're printed.


Reading medical research papers is the best way to keep abreast of progress against NHL.


An indispensable resource is Medline, maintained by the National Library of Medicine.


Medical texts can provide you with the foundation for understanding more timely resources.


Commercial firms exist that can do a medical literature search for you.


Help from others who have been through it too, is beyond estimation.


Your doctor may be using a different dose for very good reasons.


Your doctor is generally the best person to tell you how to interpret test results.


The National Cancer Institute publishes a great deal of information on untested remedies.


Certain parts of the literature search process should be repeated about once a month.

Researching NHL


The following excerpt is taken from Chapter 24 of Non-Hodgkin's Lymphomas: Making Sense of Diagnosis, Treatment, and Options by Lorraine Johnston, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

How to obtain NCI's information

The information on cancer amassed and maintained by the National Cancer Institute, a division of NIH, is the granddaddy of all cancer databases, and should be your starting point for learning the basics about NHL. It's accurate and current. You can access this information in several ways.

By phone

You can call NCI at 1-800-4-CANCER and request that information on NHL be sent to you by mail free of charge. Remember that the information geared to physicians is much more useful and detailed than that written for patients. If you feel uncomfortable asking for physician information, you can give some justification or even make some up. For example, you could say that your doctor asked you to request this information. One patient said that he was writing a newspaper article that required in-depth material. You might want to ask as well for literature that describes all of the NCI publications that one might order, such as tracts that describe dealing with fatigue or depression.

By fax

The information available by phone request is also available by fax. Call 1-800-4-CANCER and ask for instructions for faxing.

By personal computer

If you have computer access, you can read the National Cancer Institute's state-of-the-art NHL treatment statement for physicians, as well as an immense collection of other literature, at their Web site (http://wwwicic.nci.nih.gov). Follow the path for health professionals to PDQ information and the word "treatment."

You may retrieve the NCI physician's statement on NHL via email by keying the encoded identifier cn-100066 into the message area, with no other information, such as your signature, included in the message area. Send this email to cnet@icicc.nci.nih.gov.

If you'd like a list of all NCI information that's retrievable by email, send the single word help to the same email address, cnet@icicc.nci.nih.gov.

How to obtain medical research papers

Reviewing the research papers published in medical journals is the best way for an NHL survivor to get the most current information. Textbooks are out of date almost as soon as they're printed owing to the time delays of production. NCI PDQ information is a good foundation, but doesn't reflect every emerging trend still in the test phase--just state-of-the-art standards for care.

Medical journals that tend to have many articles on NHL are Blood; Transplantation; Leukemia and Lymphoma; Journal of Clinical Oncology; The British Journal of Haematology; The American Journal of Hematology; Bone Marrow Transplantation; The European Journal of Haematology; Seminars in Haematology; Haematologica; The Annals of Hematology; Leukemia Research; Current Opinions in Hematology; Leukemia; Cytokines and Molecular Therapy; Hematology and Oncology Clinics of North America, and The Journal of the National Cancer Institute.

If you like to read about basic cancer research that's years away from becoming treatment, the journals Science, Cell, and Nature Biotechnology are good choices.

Many medical journals are now on the Web, including Blood; Bone Marrow Transplantation; Science; The Journal of the American Medical Association; The American Journal of Hematology; and The Journal of the National Cancer Institute. Some of these cannot be viewed online unless you're a subscriber to the standard paper edition.

Reading medical research papers is arguably the most difficult part of learning about progress against NHL, as well as the best way to keep abreast of progress. A medical dictionary will serve you well in this effort, and you should ask your doctor about parts that are not clear. Usually the abstract (summary) of a paper will suffice, as abstracts of cancer research studies normally contain conclusions, but at times obtaining the full text of the paper will be necessary.

If you use the full text of a paper, don't try to understand the whole thing at first. Just read the introduction, the conclusions, and the discussion. The middle sections deal with scientific methodology that's important in verifying that the research was performed to strict scientific standards, but this part has been peer-reviewed by other scientists and the editors of the journal. This material is usually, but not always, less important to a patient trying to find good prospects for care. As you become better acquainted with research papers and their terminology, occasionally you may want to read the remaining sections as well.

By subscription

Subscription costs for some of the journals such as these usually start at about one hundred dollars per year, and can go much higher. The disadvantage of subscribing to individual journals, besides the accumulation of hard-to-index paper copy, is that good research articles on NHL will be spread among all of these, and subscribing to several becomes prohibitively expensive.

By using Medline

An absolutely indispensable resource--some say the most important resource--that you can use is Medline, maintained by the U.S. National Library of Medicine (NLM). Various Medline search engines, such as NLM's, which at the time of this writing is free, are available on the Internet, giving you access to the nine million medical research papers in the National Library of Medicine.

If you don't have computer access, ask a friend or relative who does to do a search for you. Alternately, a nurse or someone affiliated with a hospital or library may have Medline access. The National Library of Medicine's Medline Web address is http://www4.ncbi.nlm.nih.gov/PubMed/.

If you're using a computer, at most Medline sites you'll generally find a search engine that accepts keywords and returns summaries of the medical research publications that match your keywords. For example, if you key the terms:

NHL, treatment, CHOP
and click on the search button, you'll receive in return the titles of the many studies regarding treating NHL with CHOP. Clicking the mouse on each title will cause the summary (abstract) of the study's results to display on your screen. You'll note that the latest studies are displayed first. After you've read a number of these studies, the terminology will become familiar, and you can repeat the search often in the following days or months, using new keywords.

Almost all of the Web-based Medline search engines use an organizational hierarchy called MEdical Subject Headings (MESH). MESH terms group references by category so that you'll get more research papers returned for your searching efforts, even if you're not familiar with the right medical terms or if you misspell a word slightly. Some Medline search tools invoke MESH terms behind the scenes when you enter a keyword; others, like PaperChase, will prompt you to pick a MESH term from a list that they produce that is associated with the keyword you entered. Still others have advanced searches you can invoke using MESH terms explicitly.

Here is a partial list of MESH terms that might be used behind the scenes or offered to you as a choice when the word "lymphocyte" is the keyword used in a Medline search:

  • LYMPHOCYTE COOPERATION

  • LYMPHOCYTE COUNT

  • LYMPHOCYTE COUNT, CD4

  • LYMPHOCYTE CULTURE TEST, MIXED

  • LYMPHOCYTE DEPLETION

  • LYMPHOCYTE DIFFERENTIATION ANTIGENS, B

  • LYMPHOCYTE DIFFERENTIATION ANTIGENS, T

  • LYMPHOCYTE EPITOPES, B
A good way to get background information on any medical topic is to seek out the review articles in Medline. Enter various search terms, like:
  • immune, lymphoma, review

  • leukocytes, immune, review

  • dendritic, immune, review
This will retrieve the abstracts of review articles that are geared to physicians who might not be specialists, articles appearing in more generalized publications such as Family Practitioner or Nature, which contain more explanatory material and make fewer assumptions.

If you need help with searching, you can call the National Library of Medicine at 1-800-272-4787 or (301) 496-6308.

If the Medline summaries (abstracts) you read are more tantalizing than edifying, you can order the full text of any research paper from companies that specialize in this service. Some of these companies, such as InfoTrieve, are Web-based; others can be found by calling a medical school library and getting recommendations from a librarian. Unfortunately, at the time of this writing, the National Library of Medicine's service does not offer full text retrieval to those not associated with an academic library. Those who are, however, can use the Loansome Doc service to order full text of papers.

On the Internet, the Medline service providers HealthGate, Medscape, Helix, PhyNet, PDRnet.Com, SilverPlatter, Ovid On Call, Infotrieve, PaperChase and others offer full-text services for a fee.

By using medical libraries

Another way to find articles in medical journals is to visit a medical or university library and examine their journals and recent texts, borrowing or photocopying what you find most useful. Copyright law permits photocopying one copy of a journal article if it's for your own immediate use. Avoid relying solely on textbooks that are older than two years, as the time it takes to bring a text to print makes the source material used to prepare a text quickly out of date.

Note that some university and medical libraries restrict entry to those affiliated with the institution is some way. You can find the nearest medical library open to the public by calling the National Network of Libraries of Medicine at 1-800-338-7657.

Your local hospitals also may have medical libraries.

To find articles in medical journals, ask the main information desk where periodicals are stored and how to search them by subject. There's some variety in how different libraries store, search, and retrieve journal articles. Some academic libraries have all periodicals stored on CD-ROM, for example, but others are still stored as paper copy in the stacks. Regardless of these differences, there's always a way to search by subject, and this should be your starting point. The library you visit may also have access to Medline or Index Medicus.

Often the periodicals section of a medical or academic library will have staff devoted to helping you. All should have material you can read at your leisure describing how to search their collection. Don't be shy about asking for help. Most librarians are proud of their ability to root out obscure references and are in that career because they want to connect people to information.

Arrive prepared to pay for photocopy fees and with coins for photocopy machines.

By hiring a search firm

Before hiring a commercial firm to do a search of the medical literature, you might want to call the National Library of Medicine's Management Desk at 1-800-638-8480 and ask for whatever help they can provide.

You might choose to pay a search fee to one of a number of companies who provide this service. Tell them what topic you're interested in, but keep in mind that the more specific you can be, the better: treatments for ALL for preschoolers, rather than childhood leukemia, for instance, will yield more useful material on this topic. The search firm will locate copies of articles from medical journals and mail them to you.

Here's a partial list of such companies. Their being included here does not imply an endorsement of their service:

  • The Health Resource, Inc.: (501) 329-5272

  • Can Help: (360) 437-2291

  • Schine On-Line Services: 1-800-FIND-CURE

How to obtain medical textbooks

Texts on cancer, immunology, hematology, and NHL can provide you with the foundation for understanding more timely sources such as the papers published in medical journals. In general, the more recent the text, the better.

A source of background information might be an immunology text aimed at pre-med college students or first-year medical students. The terminology might be a notch higher than many people are comfortable with, but not nearly as difficult as that found in medical journals, and definitely geared to providing broad, fundamental information. They'll probably range in price from $40 to $200, but it's fairly easy to get used copies at college and university bookstores.

Using the list of books in the Resources on this site as a guide to reliable texts, visit your local public or academic library or a medical bookstore.

Medical bookstores usually are found near medical schools. Some of the largest well-known bookstore chains also carry hard-to-find textbooks such as Magrath's 1997 text on NHL, or they can order them for you. Several bookstores have Web sites that greatly facilitate ordering books, especially if you're not feeling well enough to drive, park, browse, and lug heavy texts home.

Because of the high cost of textbooks, borrowing texts is an attractive alternative for most people.

If you haven't used a public library lately to search for holdings, you might be pleasantly surprised to find that, in many cases, the old card catalogs are gone, replaced by fast and easy-to-use computer workstations. Their databases can tell you within a few minutes how many copies of a book are in their system, which branches of the library own the book, whether another borrower has charged it, and when it's due back.

If your public library is in a large urban area, the materials you need may be readily accessible, but if not, your library system may be able to borrow the materials you need even if it's not in their holdings. As with searching for medical research papers, it pays to ask for help. You may have to wait longer for an interlibrary loan, but it can save you the cost of an expensive text.

One book, The Wisdom of the Body, has a chapter on blood and the immune system. It might not be as complete as some would like, but it's readily available in many public libraries.

How to find clinical trials

New and possibly better treatments are available to NHL patients in carefully controlled settings called clinical trials. You should become familiar with the trials that are available before you need one, for frequently trials are needed when events have reached crisis level and time is running low.

In order to choose the best from among several clinical trials, it's necessary to be familiar with the track record, if any, of the chemotherapeutic agents being used in each trial. Each of the drug names appearing in a trial's title can be used as a keyword to search medical journals for any previous research studies published. This is a daunting task; do not expect to finish it in one sitting or even in a few days. Once it's done, though, you only need to search for new drugs as they first appear in the clinical trials database or among your other sources of information.

You can use several methods to find clinical trials. These are discussed in the following sections.

Ask your oncologist

Ask your oncologist which trials would suit your medical circumstances. This has its advantages and disadvantages, one advantage being that you need do very little except trust.

Call the National Cancer Institute

Call the NCI at 1-800-4-CANCER and ask about trials for your subtype of NHL. Specify whether you're willing to travel--otherwise they'll send you local trials only--and be sure to ask for the full document, not the summary.

Hire a search firm

Commercial firms exist that can do a medical literature search for you. A partial list of such companies appears earlier in this article.

Personal computer

You can use a computer to research U.S. and international clinical trials at the NCI's Web site
( http://cnetdb.nci.nih.gov/trialsrch.shtml). This, in conjunction with learning to use Medline, is by far the most comprehensive way to check on new treatments being tested. Once available only to those who subscribed to the NCI's Information Associates' program for $100 per year, this tool is now provided free of charge by the NCI on the Internet. We strongly suggest that you examine all trials available for NHL, not just those in your area.

When you visit this site, you'll be presented with a menu of choices for finding trials by cancer type, location of trial, kind of trial, and so on. Use the down arrow next to Diagnosis to expand the list of cancers, then scroll down and click on one of these two:

  • lymphoma, non-Hodgkin's, adult

  • lymphoma, non-Hodgkin's, childhood
If you're using this search engine for the first time, it's a good idea to view all NHL trials available for adults or children. Use the down arrow next to Trial Type to select the word "treatment," then click the search button. The result will be a large list of all trials for NHL that focus on treatment.

You can repeat the search using the City and State fields to see trials only in your own area, or with the phase field to see only phase I, phase II, or phase III trials.

If you're interested in a particular kind of drug or method, you can use the Modality field to select only trials using this technology, such as monoclonal antibodies, which are categorized as such and also as antibody therapy.

Other means of finding clinical trials include:

  • CenterWatch's site on the Internet to track new cancer treatment trials. Find them at http://www.centerwatch.com/.

  • Commercial Internet service providers such as America Online (AOL) to receive email press releases from pharmaceutical companies concerning new products in development.

  • The National Childhood Cancer Foundation site to find trials specifically for children. On the Web at http://www.nccf.org/ or call 1-800-458-6223.

How to find support groups

Local hospitals, a local branch of the national Wellness Community, the American Cancer Society, and the Internet offer solid information and access to others who have been through it, too. Their help is beyond estimation. The American Cancer Society can be reached at 1-800-ACS-2345; ask for their I Can Cope program. The Wellness Community in your area is listed in the phone book.

If you have Internet access, the Association of Cancer Online Resources (ACOR) has pointers to all of the Internet hematologic cancer email discussion groups. Highly recommended are the NHL list, run by Robert Scott Pallack, for emotional support and medical information, and the NHL-LOW list for medical information only--no emotional support--about low-grade NHL. HEM-ONC, run by GrannyBarb Lackritz, is for discussion of all hematologic cancers; PED-ALL for children with NHL being treated on ALL protocols; and BMT-TALK for those planning a bone marrow transplant. A new Mantle-cell NHL Internet discussion group has just been formed. For these and other Internet discussion groups, ACOR (http://www.acor.org/) offers a handy automatic subscription feature.

For kids with NHL and a personal computer, Sickkids
( http://tile.net/listserv/sickkids.html) is a discussion group just for children, but supervised by adults.

Several of the groups listed in the following section, "How to find groups for curing lymphoma," also offer one-on-one phone support for those with lymphoma or those planning a bone marrow transplant.

How to find groups for curing lymphoma

These three nonprofit groups specialize in helping those with lymphoma and in supporting research:
  • The Lymphoma Research Foundation of America. This group has an impressive record of funding lymphoma research. Call (310) 704-2040, or visit their Web site at http://www.lymphoma.org/.

  • The Cure for Lymphoma Foundation. Call (212) 213-9595, or visit their Web site at http://www.cfl.org/.

  • The Leukemia Society of America. Call (212) 573-8484, or visit their Web site at http://www.leukemia.org/.

Blood and Marrow Transplant Newsletter is an excellent resource for all kinds of transplant information, and especially for finding a lawyer if you're having insurance payment problems. Call (847) 831-1913, or visit their Web site at http://www.bmtnews.org/.

The American Cancer Society. Call 1-800-ACS-2345, or visit their Web site at http://www.cancer.org/.

The National Marrow Donor Program can be reached on 1-800-4-MARROW, or visit their Web site at http://www.marrow.org/.

How to verify drug information

Pharmaceutical information tools are useful for finding drug side effects, mode of action, and marketing names. Your pharmacist, your library or bookstore, your computer, and the FDA can be sources of information.

You can call your pharmacist for information about drugs, or ask for the foldout paper of small print that comes from the drug manufacturer but is seldom included with your prescription unless you ask for it.

The Physician's Desk Reference (PDR), a compendium of information about drugs, is now reprinted in versions that are easier for the general public to understand, but you might appreciate the learning experience gained from reading the original PDR. In addition to the PDR, many other drug encyclopedias are available as well for the general public.

The Food and Drug Administration is a good means for verifying drug information. Call 1-888-332-4543, 1-800-532-4440, or visit their Web site at http://www.fda.gov/.

You can report adverse effects of drugs to the FDA, too, or use their MedWatch Web site: http://www.fda.gov/medwatch/how.htm.

The following sites have search engines requiring only the drug name:

How to verify your chemotherapy dose

You can use the general formula for calculating dosages of your chemotherapy drugs and can compare it to the amount that is recommended for you in your medical records. Keep in mind, though, that your doctor may be using a different dose for very good reasons.

Glaxo's DoseCalc site deserves special mention as a user-friendly research site because it's a great way to verify your chemotherapy dosage. Go to the URL, http://www.meds.com/DChome.html. Enter your height, weight, and a drug name. Behind the scenes, it calculates your square feet per meter (yes, square, not cubic, feet per meter--the basis for most chemotherapy dosages) and gives you the standard dose administered for a person your size.

You can also do this calculation using your body surface area and the standard recommended dose for your body surface area. You can use one of the following Web sites to calculate your body surface area:

Or try a Web search on the phrase "body surface area." Note that some of these sites use slightly different fomulae, and so the results will differ slightly.

For the truly dedicated, calculation of body surface area can be done by hand. You will need a scientific calculator (there may be an application on your personal computer for scientific calculation). One formula for calculating your body's surface area in square meters is the DuBois & DuBois formula:

(kg.425) X (cm.725) X 0.007184
or
(your weight in kilograms raised to power 0.425) times (your height in centimeters raised to power 0.725) times 0.007184

First convert your weight to kilograms and your height to centimeters. One pound = 0.45 kilogram; one inch = 2.54 centimeters:

  • If your weight is 140 pounds,
    multiply 140 x 0.45 to get 63 kg.

  • If your height is 5'6"
    multiply 66 x 2.54 to get 167.64 cm.

To raise a number to a power in Win95, click Start, Program, Accessories, Calculator. Click View; click Scientific. Using our example above, enter 63, then click the X^Y key and enter .425; finally, click equal.

Do the same for height:

63 kg to the power 0.425 = 5.817
167.64 cm to the power 0.725 = 40.9896
Then multiply 5.817 X 40.9896 X 0.007184= 1.713

Thus, 1.71 rounded is your body surface in square meters if you're 5'6" tall and weigh 140 pounds.

Once you've calculated your body surface area, you need to know the recommended dose per square meter for each of the drugs you're getting. You can ask your doctor's staff for this information or use Glaxo's site, discussed above. If you notice a substantial difference between the calculated and actual dose given, ask your doctor why. Often there are very good reasons for differences, though.

How to interpret test results

Here are a few ways to find the normal values of tests that you can compare to your own test results. Please note that a value outside of the normal range does not always indicate a problem. Your doctor is generally the best person to tell you how to interpret test results, but there are several references available for comparing your test results to normal values.

The Merck Manual, either the paper version or at their Web site, has a section devoted to laboratory pathology. Many public libraries have a copy of the Merck Manual in their noncirculating reference section. At Merck's Internet Web site, just enter the test name and click on the search button. http://www.merck.com is the home page from which you can find the search facility.

Each of the following Web sites has a search engine for finding the normal values of various test results:

How to assess unproven remedies

If your treatment isn't giving you good results, you may become vulnerable to claims for a quick cure made by certain practitioners. While some of these treatments may have merit, others are simply the means by which charlatans realize financial gain. How can you separate treatments that may have unrecognized medical potential from those that have been tried and discarded by reputable researchers, and those that are, or were, the focus of legal action?

QuackWatch on the Internet gives the medical scientist's evaluation of those unusual remedies you've been hearing about: http://www.quackwatch.com/.

The National Cancer Institute publishes a great deal of information on untested remedies. Call 1-800-4-CANCER.

The American Cancer Society has a list of questions you should ask before becoming involved with unusual remedies. Call 1-800-ACS-2345, or visit their Web site at http://www.cancer.org.

The Consumer Health Information Research Institute provides an integrity index, a credibility of publication index, including one that rates cancer books. Call (816) 228-4595 or visit them on the Web at http://www.reutershealth.com.

Unique Web resources

If you don't have a personal computer yet, or if the kids won't let you near it, this section may convince you how easily and quickly you can get the answers you've been looking for.

Please note that Web sites may be inaccessible on occasional days owing to data reorganization or maintenance, and that Web site addresses can change.

What next?

Think of researching your condition as a cyclical activity. Although you can accumulate and absorb the basic facts about NHL in a burst of initial activity, certain parts of the literature search process should be repeated about once a month in order to stay in touch with improvements in care. Three areas in particular should be revisited on a regular schedule:
  • The National Cancer Institute updates the physician's state-of-the-art treatment statement as new standards of care are chosen. If the treatise on NHL is modified, the NCI can notify you via email, or you can call the NCI at 1-800-4-CANCER each month and ask them to check the date of last update on the NHL physician's statement. The NCI classifies changes to these documents as either substantial or editorial. Editorial changes might include replacing one citation with a better one.

  • Every month, new research papers on NHL are published in many medical journals, and their summaries (abstracts) are collected in Medline and in Cancerlit, which is a subset of Medline consisting of cancer literature only.

  • New clinical trials for treatment are added to the NCI database every month.

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