I am delighted to see that we patients finally have a book of our own, thanks to Lorraine Johnston, a member of the online lymphoma community. This is a solid, well-researched book with lots of useful information, and highly recommended for patients, caregivers, and health professionals. Lorraine uses the words of people with lymphoma she has met online throughout the book, aptly illustrating each topic with patient experience. Please ask your local library to carry this book!
Chapter by chapter synopsis:
Preface: Encouraging words.
Symptoms and diagnosis: The best list of initial symptoms seen anywhere. The chapter helps a newbie walk through the initial steps of diagnosis and decision making. Perhaps the need for a second and third opinion should be more stressed, especially with hard to diagnose cell types like MALTomas or mantle cell. A good discussion of the emotional awfulness that accompanies diagnosis.
Finding the right oncologist: Helpful and extensive info on looking for doctors and treatment centers, including the need to inquire of the doctor how many lymphoma patients of your cell type he has treated (especially important for rare lymphomas).
What are the Non-Hodgkin’s lymphomas? Covers incidence statistics, differences between lymphoma and leukemia (may be the same disease), differences between NHL and other cancers, and possible causes. Interestingly, there is some evidence accumulating that mono may be a risk factor. Also covered are grades and staging. Information on cell types is minimal.
Prognoses: Explains why medical prognostication is a very iffy business.
Tests and procedures: An impressive run-down of all the various testing procedures they put us through!
How the NHLs are treated: A thorough introduction to current mainstream treatments, types of chemo, radiation, phototherapy (used for T cell lymphomas), immunotherapies, surgery, transplants, and treatment of special subpopulations. Also brief summaries of most common treatments for low-grade and higher-grade disease.
What to expect during chemotherapy: Preparation, how chemo is administered, and how to check your correct dosage.
What do expect during radiotherapy: Walks you through radiation treatment step by step, describes how it is administered, and dosages.
Side effects of treatment: A very thorough list of various side effects and what to do about them. Frank and comprehensive.
If you’re hospitalized: Many helpful tips.
Stress and the immune system: A long and interesting chapter on the influence of stress on health, its link to cancer (inconclusive), and descriptions of many stress reduction techniques from acupuncture to writing, and medications.
She notes that Norman Cousins "undertook to improve or cure his debilitating condition by focusing on positive, happy thinking" but does not mention the high dose vitamin C that accompanied his laughter treatment. She cautions to check with one’s oncologist before having massages, and notes that the exact mechanism by which NHL spreads is unknown.
As an aside: To my delight, she also mentions the theory that we humans spent part of our evolution in water. For those who would like to read more on the controversial theory, I recommend Elaine Morgan’s Descent of Woman, and Aquatic Ape. One web site on the theory is www.geocities.com/Athens/5168/aat.html
Interacting with medical personnel: Good suggestions on how to handle problems and conflicts.
Getting support: What and how to communicate with your family and friends; about support groups, including online support groups (the list of online support groups is dated but the publisher says that they list updated resources on their site). Also info on employee assistance programs, and how to handle tactless questions from acquaintances.
Insurance, finances, employment, record-keeping: An overview, and many good tips. She advises for each of us to check how long the hospital plans to keep our biopsy samples and to specify that they keep them forever. If they cannot comply, move your samples elsewhere. She does not say what the usual length of time is. I never thought about this before, assuming they keep them for a very long time. She also stresses to get copies of all records for your own file (even CT scans and MRIs). Another good idea I had not heard before: keep a log of all medical appointments, and keep this as part of your medical files.
After treatment ends: Valuable insights and suggestions on dealing with reentering the world of normalcy.
Late effects, late complications: A very comprehensive and thorough list of long-term problems that may accompany chemo and radiation. The only one I noticed missing was lowered resistance to infections
Sexuality, fertility, and pregnancy: A frank discussion of the problems that may be caused by chemo and radiation; advice on fertility planning, and treatment during pregnancy.
Relapse: Discussion of clinical and emotional factors in relapse.
Clinical trials: How clinical trials work, how to find them. This thorough chapter introduces the reader to clinical trials in detail, encourages patients to research trials on their own, and describes how to get admitted and what to expect once you are in; points on how to get experimental treatment outside of trials, and how to get your insurance to pay.
Transplantation: A clear and detailed treatment of a difficult subject, including step by step description of the transplant process.
Traveling for care: About free air fare and lodging.
If all treatments have failed: Focuses on the physical and emotional aspects of dying, and speaks directly to the dying person rather than just the caregivers. Sensitive yet candid; I found it helpful, touching, and courageous.
A brief discussion of what lymphoma death is like: many individual patterns depending on the organs most affected, sometimes pain is an issue but many times it isn’t. Death from secondary infections or blood loss is less common than in leukemia. Often there is a brief cognizance at the very end. Pointers on making dying easier: the need for adequate pain medication and the vigilance of caregivers assuring it is given; the role of hospice care; the question of euthanasia; the planning of your memorial ceremony.
Future of therapy: Lorraine briefly recaps the "genetic damage" theory of cancer causation. (I would have liked to see a broader theoretic framework since many types of lymphoma readily respond to immune autoregulation, and since the natural history of MALTomas show that the body can often repair the genetic damage if the causative factor is removed. Which raises more possibilities for research and treatment.)
She notes that several cancer research trends have shifted in the last 20 years, and discusses the following:
* substance identification substances (using the body’s substances, or genetically engineered substances that resemble the body’s own to counter the progress of cancer
* tumor stabilization (instead of rushing in to kill the cancer, the researchers focus on controlling it so that the person and the cancer can successfully coexist for a long time – in other words, approaching cancer as a chronic disease such as diabetes)
* supportive care (great deal of progress in taking better care of patients while in treatment)
* cancer prevention (more sophisticated research is now ongoing which traces the effects of lifestyle factors over time)
Lorraine then shifts to a detailed and interesting survey of the various clinical trials now underway for all types of lymphoma in the U.S. (she says there were about 200 at the time of her writing). She looks at those substances and techniques which are novel, and chooses (thankfully) to omit those trials which merely combine old drugs in new ways.
New substances include
New techniques mentioned are transplant improvements such as using IL-2 to stimulate stem cells to regenerate, stimulating graft vs host disease, and novel ways to purge the marrow, as well as hyperthermia
She also lists a variety of new ideas lower on the ladder of development, such as antisense, gene therapy, recombinant viral vaccines, telomerase inhibitors and others. This chapter alone is worth the price of the book. I cannot do it justice here, you just have to read it yourself!
Researching your lymphoma: Knowledge is empowering. As Lorraine says: "The more you learn, the more control you have over how events unfold, not only because you’ll be making better health and treatment choices, but because you can take back some of the control that is lost in the clutter of automation that now accompanies cancer diagnosis and treatment. In general, the more you learn the more confident and relaxed you’ll ultimately be when dealing with NHL." Amen, and amen!
This chapter introduces the reader to researching one’s illness, dealing with issues of what to do when your dr is threatened by what you bring in, to the nuts and bolts of the actual gathering of documents. Info on finding support groups, lymphoma organizations, pharmacology data, and how to verify chemo dosage, interpret test results and assess unproven remedies concludes the chapter. A significant though minor weakness is Lorraine’s bias against alternatives – referring patients to the notorious QuackWatch group is like sending one to the Spanish Inquisitor for information on Protestants. One does not have to appreciate alternatives to be fair.
Appendices: Appendix A lists a variety of NHL resources; such lists are dated before books go into print, and the publisher has agreed to keep an updated list on their web site. Appendices B and C post blood and marrow test values, and body surface areas tables for chemo dosage calculation. Appendix D gives classfication table comparing the Working Formulation, Rappaport, Kiel and Lukes-Collins taxonomic systems. Appendix E lists common chemotherapies. Brief notes, glossary, bibliography, and index complete the book.
A very fine effort overall! Kudos to Lorraine Johnston and her editor. With this solid and thorough book, NHL patient education has made a big leap forward!
To look for updated resources and an interview with Lorraine, go to www.patientcenters.com/lymphoma and to order the book, go to www.patientcenters.com/catalog
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Errata:
P. 42 & 93; fails to mention low-level radiation as a possible factor in lymphomagenesis.
P. 43, par. 4 is unclear. It seems of great practical import to be able to avoid cancer-causing substances, and of equal concern whether eliminating the agents of continuous stimulation will result in a regression or cure. (Possible typo.)
P.52; defines monoclonal antibodies as while blood cell proteins designed to attack only tumors – not so. For example, Rituxan is designed to eliminate all mature B-cells, healthy and malignant. They regenerate readily from unharmed precursor cells. (Also on p. 56)
P. 142; Francis Bacon quote has a possible typo? "he that will apply new remedies must expect new evils"?
P. 419; Marilyn Tyler is a survivor of immunoblastic NHL, an intermediate-grade disease.
Suggestions: When I got the book I was drawn to peer closely at the pictures of several people on the cover, searching for faces of people I may know. When I later learned that these were not lymphoma patients but just generic humans the publisher pulled from some database, I felt somehow betrayed. Would it really add much more work to collect a few real photographs? And I wished for a more positive portrayal of the "watch and wait" modality.
Written by Vera Bradova © 1999
Updated 7-20-1999
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