MDS So you have it
- What now?
“…myelodysplastic syndrome...no known cure…treatment…mainly supportive…” the doctor solemnly intones – as you sit in shock and disbelief, and immediately start wondering how long you have. You go home, more scared than despondent, to talk with your loved ones and try to make some sense of what you have heard. And as you talk, questions start to come up – questions like: “Maybe the doctor is wrong? He said there was no cure? Who is this doctor anyway? Maybe he doesn’t know what he’s doing? Should we get another opinion? Isn’t there anything else we can do?” These are valid questions. Let’s try to help you find some answers.
Your Doctor’s Qualifications
Presumably the doctor you have seen is one to whom you were referred, and is a specialist in hematology, and presumably the diagnosis is based on a bone marrow biopsy. If not, it is advisable to find another doctor now. It is legal for any licensed physician to practice hematology, but you should be under the care of a doctor who is board-certified by the American Board of Hematology. This means that she has completed specialty training in internal medicine, then spent two or three additional years in a fellowship program in hematology (or hematology and oncology), and – and this is critical- passed an examination given by the American Board of Hematology to attain certification. A board-eligible doctor is one who has taken all the required training, but has not yet passed the board exam. The exam is not always given immediately upon completion of training, so maybe the doctor has not yet had an opportunity to take it. On the other hand, maybe they have taken it and failed – they can still practice as a hematology specialist without board certification. While it is true that a doctor without such certification might be a good hematologist, there is no way for you to know. So it is best to be under the care of a board-certified doctor.
Board certification is the most important of the doctor’s credentials. The only other factor of importance in the doctor’s educational background is where the doctor took his hematology fellowship. Most ideally, for your purposes, it would have been at one of the designated MDS Centers of Excellence (listed as MDS Medical Centers on this web-site) in relatively recent years, as this would mean that the doctor has probably had considerable experience with MDS patients. Next best would probably be any other university medical center in the United States. Again, good doctors can come out of other situations, but it is wise to eliminate uncertainty wherever you can.
You should also find out about how many major hematology meetings the doctor is in the habit of attending. There is a tendency for a doctor to be either a “meeting attending doctor” or not. You want to have one of those doctors who feel compelled to keep up to date on the latest information. The doctor should probably attend at least one major hematology meeting per year – “major” meaning a multiple-day meeting of national interest.
Also important is the number of MDS patients the doctor currently has in his care, since familiarity with the problem and experience in its management is definitely of benefit in dealing with this difficult situation. In addition, imagine your doctor at one of the major hematology meetings. At such a meeting there are often courses and lectures and exhibit demonstrations going on simultaneously, and your doctor will be choosing what he wants to take in. If there is a presentation on MDS, he is much more likely to attend it if he is carrying a large number of such patients than if he hasn’t seen a case in the past six months.
Your Doctor’s Job
At the recent MDS patient conference held in Palo Alto, California, one of the most striking revelations was the high percentage of patients who expressed considerable dissatisfaction with their doctor. Whereas some of this dissatisfaction may be justified, let’s consider the complaint “All I get from my doctor is “I don’t know””.
Firstly, it needs to be understood that MDS is not one specific disease – rather, it is failure of the bone marrow to produce blood cells in the normal manner, as determined by laboratory testing. When blood and bone marrow samples from patients diagnosed with MDS are examined under the microscope, there are many differences in the appearance of the cells, such that patients with bone-marrow dysfunction have been classified into five or six different categories, depending on certain characteristics of the cells. So all MDS is not the same- and neither is the cause all the same. It is known that exposure to radiation, or to the chemical benzene, or to chemotherapy drugs can cause bone-marrow failure (MDS). But in the vast majority of cases, the cause is not known – and who knows how many different causative factors there may be within the category of “unknown”. There may be a myriad of as yet unidentified “diseases” that can cause bone-marrow failure and are lumped into the broad category of MDS.
To imagine how difficult this is for your doctor, let us consider an analogy which is not perfect, but which may help to understand the situation. Let us compare the laboratory diagnosis MDS to the symptom “abdominal pain”. Neither is a specific disease entity. Abdominal pain varies regarding the nature and location and severity of the pain. In MDS, the cells produced by the malfunctioning bone marrow look different under the microscope from one case to another. In the case of abdominal pain, examination and further testing will be required to determine the cause of the pain and establish a specific diagnosis, which will determine what treatment is expected to help. But in the case of MDS, there are no further tests that will determine a cause, and treatment is almost as difficult as it would be to treat “abdominal pain” without any further evaluation.
So when your doctor says “I don’t know” you will realize that it is not their fault and that you are fortunate to have a doctor who is honest and secure enough regarding their competence that they are willing to admit that they do not know.
Regarding what your doctor can do for you, it is their job to keep up to date on all current aspects of the management of a patient with MDS. Then they must monitor your case and make appropriate recommendations regarding treatment. Unfortunately, at the present time, treatment options are quite limited. Doctors can recommend medications to try to stimulate the bone marrow to put out more blood cells, or he can recommend transfusions. And they now have an FDA approved drug called Vidaza (5-azacytidine) that has produced a positive response (not a cure) in about 15% of patients. Bone marrow transplantation may be an option for some younger patients who are in otherwise good health. And it is an important part of their job to communicate with you regarding their ongoing assessment of your case and their treatment recommendations.
So since your doctor does not have a known cure for you, and you want to get better, someone else is going to have to take charge here, and that someone is you (perhaps with some help from family or friends). In fact, we need to put special emphasis upon the attitude with which you enter into this partnership effort with your doctor to improve your health. There is strong tendency, particularly in older Americans (and most MDS patients are older), to regard the doctor as an authoritarian figure to whom we unquestioningly submit ourselves for treatment. In general, it is more appropriate for patients to consider themselves in charge of their health care, with the doctor as a very powerful and indispensable ally. And specifically, with MDS, where medical science does not have many answers yet, leaving your doctor without much to work with, you are going to have to rely upon yourself to improve your situation. You need to have a doctor who will welcome your intense involvement, and will recognize it as help rather than a lack of confidence in their knowledge.
First, learn what you can about MDS in general, and keep up to date on all new developments that are made public. Your best sources of information are the Internet, and that excellent organization, the MDS Foundation, which you certainly must join. Their website address can be found elsewhere in this publication. Regarding other information from the Internet, be sure to check on the source of everything you find there, to see that it comes from a reputable medical center. And do not hesitate to ask your doctor questions about the information that you get. In so doing, you are of course hoping to get answers, but just as importantly, this will let the doctor know that you are an intelligent and informed patient, and that he’s going to have to stay well-informed himself to stay a step ahead of you. Because in reality, knowing everything about MDS is your doctor’s part of the job, and your most important job is to do everything that you can to maximize your health from a general standpoint.
It is very important to realize that your body has a natural tendency to heal itself. Throughout your entire life, your body has been constantly healing injuries, repairing the damage done by environmental toxins, fighting off uncountable numbers of bacteria and viruses, killing aberrant abnormal cells before cancer develops, and doing a good job of maintaining reasonably good health, probably without you consciously doing much to be actively helpful. Now your body needs you to become aggressively involved in providing an atmosphere that will help it to heal. Tremendous and naturally intelligent healing power is available and provides you with an excellent chance to improve your situation. So do not be discouraged — a positive mental attitude is the necessary first step.
Knowing that you can get better, even though your doctor may not have good medicine for you, is critically important. Maybe, in fact, it is an advantage that there is no established successful medical treatment for your condition, because it gives you the opportunity to work on healing yourself through natural means, and experiencing a great deal of personal growth in the process.
In order to help your body to heal itself, you must first create conditions to promote optimum general health. This means attention to diet, exercise, stress management, emotional well-being, and spiritual growth. Unfortunately, most MDs are not well equipped to help you in these areas, particularly when your medical difficulty is not clearly related to diet, lack of exercise, stress, etc. MDs receive very little if any training in these areas, and as a result of both background and inclination, MDs tend to be oriented more toward crisis management and the treatment of disease processes with drugs. So you will need to look elsewhere for help.
In general, your major sources of information will be the Internet, bookstores, and medical newsletters. Some of your best help will come from non-traditional medical sources.
We are not using the word diet here to refer to a weight loss program, but rather we are referring to the relative amounts of various types of food that one consumes. Although diet is of critical importance regarding health maintenance and improvement, there is so much disagreement among those who are supposed to know about such things, and recommendations change so frequently, that we must presume that no matter what anybody says, much remains unknown. Probably one of the reasons for the confusion is that we are not all the same biochemically and metabolically. We therefore have differing nutritional requirements, all the way from how much of a particular vitamin we need, to what general type of diet will work best for us. It seems very possible that some day individual genetic analysis will show what specific nutrients a particular person needs, so that a diet (and supplements) can be tailored specifically for that person, which will not only maintain optimum health, but maybe even cure disease. In the meantime, we will have to do the best we can with the information and conflicting advice that is available. The following general suggestions are offered, with the understanding that new information could change this advice at any time, and again realizing that the same plan won’t work for everyone.
As you seek out information yourself on the subject of diet (and it is recommended that you do) you will encounter some weird and extreme diets. These are to be avoided, in the absence of reliable information about them. In general, balance and moderation are advised until we know better.
Consider making vegetables the mainstay of your diet, as well as plenty of fruit. You perhaps do not need as much meat as most Americans usually consume. Limit your intake of saturated fats, polyunsaturated fats, and transfatty acids, making olive oil your fat staple. Choose whole grain products over those made with more refined flour. Limit your intake of sugars, including corn syrup, fructose etc. and products containing them.
If, in your area, a well-trained and licensed naturopathic physician (professional designation ND) is available, she might help considerably to design a diet well-suited to you personally — a diet that could even help you to get better. In many states naturopaths are not required to be licensed, and some may be practicing with very marginal training. In fact diplomas are apparently available on the Internet, so caution is advised here. But a good ND can be quite helpful and should be willing to work with your doctor if necessary. Information regarding appropriate training and credentialing is available on line at www.naturopathic.org.
The book, “Eat Right For Your Type” by Peter J. D’Adamo, a naturopathic physician, may be of interest to you. Dr. D’Adamo’s premise is that what is healthy for you to eat is determined by your blood type. Although I don’t think the subject is quite as simple as that, it is my personal belief that he is onto something helpful, and that his recommendations offer a good starting point from which to experiment regarding which foods seem to agree with you.
- Based upon extensive reading and personal experience, it is strongly suggested that you try eliminating dairy products and wheat from your diet for at least three or four weeks. If you have any sort of allergy, such as asthma, hay fever, eczema, etc., this trial is even more strongly recommended, even though there may seem to be no direct connection between eating these things and your allergy symptoms. Both milk and wheat are known to be highly allergenic and may irritate the immune system in ways that we do not now understand, and perhaps in ways that do not result in typical allergy symptoms. If so, it seems best not to put any additional load on the already compromised immune system of the MDS patient. This suggestion is not based upon any hard science, but it can’t do any harm to undergo such a trial period and see if you perceive any benefit. Probably the most direct approach is to eliminate both dairy and wheat for three or four weeks, and if you are not feeling any better you may as well resume both. If you are feeling better, you can resume one of the foods, observe the effect, and decide from there whether eliminating one or both is helpful. If you want to see whether it has any effect on your blood count, it is probably better to continue the trial for at least six weeks before checking your blood again. It should be noted that giving up dairy and wheat is quite inconvenient, since it means not taking in anything that contains these substances. In addition to the obvious things like cheese, ice cream, and anything containing flour (bread, pasta, all baked goods, most cereals, etc.), if you start reading labels you will find many preparations that contain one or both of these foods. If you do get benefit from the elimination trial, and you decide to continue, you may want to experiment to see if you can consume very small amounts of these things in commercial preparations without being bothered.
- Vitamins and Minerals Whether or not to take any nutritional supplements is a difficult question, since again, I believe this is an individual matter. We are referring here to taking additional amounts of substances that are normally present in the diet, such as vitamins and minerals, as well as substances that are normally manufactured by the body, such as coenzyme Q10. Hopefully you will be able to locate a naturopathic physician who can help you in this area as well. It is probably a good idea to take a high-quality multivitamin and mineral preparation but there are some who would question whether or not such artificially created nutrients are of any value when not presented to the body in their naturally occurring form, in which they are combined with many other food factors. It may be that preparations containing vitamins combined with plant phytofactors (as are the Nutrilite products) are more effective. I am not aware if this has been proven. In any event, you should avoid extremely high doses of vitamins and minerals unless you have the approval of your doctor. Also, you should get approval before taking any type of nutritional supplement other than vitamins and minerals.
- Herbal Supplements As defined here, herbs are not in the same category as nutritional supplements. The effective ingredients in herbs are substances that are not in our usual foods and are foreign to the body. Therefore they fall into the category of medicines or drugs even though they do not require a prescription. Contrary to popular opinion, herbs are not automatically safe and good for you just because they are naturally occurring. Consider the mushroom family, some members of which are used to make Asian herbal remedies and some members of which are deadly poisons. Herbs are commonly prescribed by naturopathic physicians, and practitioners of Ayurveda and Traditional Chinese Medicine, as well as by herbalists with no particular credentials. Herbs, like all medicines, can be either helpful or harmful.
- The decision regarding whether or not to get involved with the taking of herbs is a difficult one, and has to be individualized, depending upon your situation. It would be unwise to take them on your own, without the recommendation of a licensed practitioner of one of the above medical systems, or a qualified naturopathic doctor. The approval of your hematologist should be obtained, unless she has told you she has nothing more to offer you, in which case you are presumably free to try anything.
Exercise is critically important for the acquisition and maintenance of good health, and should play an important part in your recovery program. Since the capacity for exercise varies greatly amongst MDS patients, we will talk in generalities here.
- Walking Probably the most beneficial exercise for all who are capable of participating is simply walking. One would like to be able to walk for up to about forty-five minutes at a fairly brisk pace – what you might judge to be about 75% of your maximum walking speed. Of course not many MDS patients will be able to do this, so you need to start out doing what you can, with the idea that duration of time is more important than speed – that is, it is better to walk slower for ten minutes than faster for five minutes. Try to increase your time by just a few minutes every week or two, if you can, but don’t push yourself too hard. You do not want to use all of your limited energy for exercise, since you need some for enjoying other aspects of life, as well as for healing. As a rough guideline, you should finish your walk feeling pleasantly tired, and within an hour you should be feeling at least as good as you did before the walk, if not better. You should not get discouraged if you can’t walk for very long or very fast. Walking for just five or ten minutes at a snail’s pace is vastly better than not walking at all.
- You need to make getting your walk a high priority, and since we all have a certain amount of inertia to overcome, you may sometimes have to push yourself to get started. You will probably find that you feel better if you walk either before breakfast, or at least two hours after eating. You have a limited number of blood cells and you need them nourishing your heart and your muscles while walking, rather than digesting your food.
- Walking outdoors surrounded by nature and in relatively clean air is probably best, weather, climate, and circumstances permitting. Walking on city streets is all right if the air is not too polluted, but if pollution is high, walking indoors is probably best for MDS patients. Indoors can be in a mall, or in a gym on a treadmill. Or, if your situation involves the necessity to walk indoors much of the time, look into the possibility of getting a basic treadmill at home. You do not need an elaborate model like the gym has, since it will not be worked nearly as hard, and your needs are not sophisticated.
- Strength Training In addition to walking, it is probably advisable to do a little work with either some light weights or elastic stretch bands two or three times a week for 10 or 15 minutes to maintain upper body strength. And devoting about the same amount of time to some mild stretching exercises to help maintain flexibility can also be helpful.
- Yoga / Tai Chi Yoga and tai chi are Asian disciplines which appear on the surface to be exercise techniques, and they are very good exercise. However, their true value runs much deeper than that. They are also very meditative and spiritual disciplines, and can help improve your health from many perspectives. It is highly recommended that you research these arts, select the one that appeals to you most, and get involved. Do not let the fact that you think you are unable to perform the activities properly discourage you from getting started. The spiritual benefits will be there anyway, and physical benefit will come from just making the effort. Tai Chi is a form of Chi-gong (which will be discussed in detail later) and there are other ways to practice Chi-gong that are much less demanding than Tai Chi and are also very beneficial.
The connection between stress and disease states is well established. It is important to minimize and get control of stress for two reasons: to maximize your chance for improvement in your health, and to make your life more enjoyable. Firstly, you need to identify and list the causes of stress in your life, and then make whatever changes you can in order to eliminate or minimize those factors. There will probably remain some stress producing circumstances over which you have no control. I believe that the best way to deal with residual stress is through meditation. We are not talking about sitting down and thinking about your problems. We are talking about any one of a number of definite meditative techniques. Perhaps the most recognized one is known as Transcendental Meditation, recognizable because it is a money making business enterprise that has been heavily marketed in the past. Once one gets past the ritualistic initiation into the society run by the self-styled Maharishi Mahesh Yogi, it can be a useful technique to help clarify thought processes and deal with stress. However, there are many other methods that are at least as good, and can be learned without cost. Most meditative techniques involve sitting quietly for periods of twenty or more minutes. There are people who have tried meditating and find that they just can’t sit still for that long, and some even experience unpleasant and stressful reactions when they try. If you are a person who prefers to keep moving, there are still excellent meditative techniques available to you. Some examples include meditative yoga, mindful walking and other mindful activities from the Buddhist tradition, and Chi-gong (including Tai Chi) from ancient China. We are not all the same, and the same method of meditation will not suit everyone, so some research into various techniques will be necessary, but I think you will find the results to be well worth the time and effort.
In addition to helping relieve stress, meditation has another huge benefit in terms of helping to develop spiritual awareness. It is difficult to understand and explain how this comes about, but I think if you begin to practice meditation, and stay with it for a while, you will experience this phenomenon. Spiritual growth is an essential factor in your quest to improve your health and must not be overlooked. Organized religion and going to church may or may not be a part of it for you, since again we are not all the same. If you are one of those whose spiritual growth has been stunted by some of the behavior of organized religion, please note that the problems are not in the Message, but are due to the actions of people who didn’t get the Message right. So let’s not throw the baby out with the bathwater. If you are one who has trouble accepting the concept of a personified deity, as in the Judeo-Christian or Islamic traditions, you might investigate Buddhism, a philosophy that is extremely spiritual without the establishment of a personified deity. Actually, there is much help to be obtained from basic Buddhistic philosophy for persons of any religious persuasion, and if such things interest you, looking into the teachings of the original Buddha might be worthwhile.
The existence of a mind-body-spirit connection is very real, despite the fact that it is a poorly understood area. Even those holistic practitioners who believe in this sort of thing and work with patients accordingly could not tell you how this connection works, and many doctors either deny or ignore the existence of such connections. Anyone who doubts the power of the mind-body connection needs only to consider the well-known placebo effect. When a patient takes a substance as a medication, thinking that it may be helpful, a favorable response is often obtained, even though medical science has no reason to think that the substance would have any effect at all, beneficial or otherwise. This is the placebo response, and it gives strong support to the existence of the mind-body connection. Because medical science cannot explain how the placebo response works, some doctors scoff at it and imply that it is an indication that there is something wrong with the patient’s mental processes. In reality there is something wrong with the doctor who is not aware of the fact that his mission is to improve the condition of the patient whether he understands the mechanism of action or not, and if that can be accomplished with the absolute safety of a placebo, everyone wins. The problem, of course, is that the placebo response doesn’t always work. But neither does any accepted medical treatment, and the fact that the response exists at all should stimulate extensive research. For help in the area of mind-body-spirit connection, you are referred to the work of Joan Borysenko, a respected pioneer in this field. Start at her website, www.joanborysenko.com.
One way that you can use the mind-body-spirit connection for your benefit is through the process of guided imagery. A simplified explanation of guided imagery is that it involves assuming a meditative state and then visualizing your body doing things to heal itself, generally with the help of a person certified in this art. Considerable information and help locating a certified practitioner in your area can be obtained from the Academy for Guided Imagery in Malibu, CA, at website www.academyforguidedimagery.com. You can, however, gain considerable benefit from guided imagery without a practitioner. I most highly recommend the outstanding guided imagery audiotapes and CDs produced by Image Paths Inc., accessible at website www.healthjourneys.com. They consist of beautiful meditative background music along with narration by Belleruth Naparstek, the very talented psychotherapist, writer, and lecturer who is the creator of this group of over forty titles. The benefits of several of these titles have been researched and verified at dozens of academic medical centers. Which ones of these can be of help to you will depend upon your individual situation, as you will see when you view the selections.
An area foreign to practitioners of Western medicine is that of working with what Eastern healers call chi, (also written qi) which is life energy or life force – whatever it is that separates living things from inanimate objects. There are several disciplines that are based on working with chi. They have their basis in the theory that chi flows throughout the body along certain pathways, and that disease states occur when the proper flow of chi becomes disrupted and its distribution in the body becomes unbalanced. Talented and experienced healers claim to be able to feel the presence of chi in the patient, and to sense its imbalances. Treatment involves restoring the proper flow and balance of chi, which should help to recover from the illness. The problem is that since there are not generally accepted methods for scientifically identifying and measuring chi, many practitioners of Western medicine do not believe that these energy-healing disciplines have anything to offer. However, most patients who get involved with a well-qualified energy healer will tell you that at the very least their treatments make them feel better, and this alone is worth quite a lot in terms of quality of life. The two energy-healing disciplines best known in the U.S. are reiki and chi-gong.
- Reiki In reiki, the practitioner uses his own hands to move the chi around in the patient, attempting to restore proper flow and balance. This is a valid discipline that can be of some benefit to some patients, but unfortunately it has been the victim of unprofessional promotion in the U.S. over that past several years. For example, if you go online, you will find that you can “Become a Reiki Master within 48 hours for $67”. So if you decide to look into reiki, be sure that the practitioner that you consult has a history of at least several years in the active practice of the art.
- Chi-gong Chi-gong is a much more complex healing discipline that comes to us from ancient China, and I believe it to be more powerful then reiki. As mentioned, chi is “life energy”, and gong can be translated as “work”, so chi-gong means “working with life energy”. There are many styles of chi-gong that have developed from different schools of thought in China over the centuries, but there are certain commonalities Chi-gong can be used for health maintenance, or to treat disease. Chi-gong treatment can be externally applied by a practitioner, or self-applied by the patient, or both. In external chi-gong treatment, a practitioner actively instills chi into the patient, and then assists in its proper circulation. When chi-gong treatment is self-applied, the patient actively practices a discipline aimed at acquiring and circulating chi. This is of great importance because many studies have shown the value of the “intent to heal”, and the patient’s own application of this intent may be very helpful. (The beneficial effect of the “intent to heal” is well demonstrated by the placebo effect discussed earlier.) The patient’s active involvement consists of a system of exercises that incorporate three modalities: physical movement, breathing techniques, and mental focus, all to acquire chi and to promote its proper flow through the body. It is part of the practitioner’s job to assist the patient in the learning of these techniques. Part of the value of chi-gong is that the physical movement involves exercise (even if it were to have no other value), and the mental focus involves both meditation and a form of guided imagery, both recommended earlier.
- Chi-gong is highly recommended because it offers the potential for considerable help. I have personally witnessed an experienced chi-gong healer using an external technique (which he developed) to treat an elderly man with advanced Parkinson’s disease. The patient had a severe tremor of both upper extremities, the typical depressed-looking fixed facial expression, and walked with a labored shuffle. Within about two minutes, and without the healer touching the patient, the tremor stopped completely, the patient’s face broke out in a wide smile, and he began talking animatedly as he stood up and began walking – still like an old man, but much better than before. When the patient’s astonished daughter asked the healer if her father were cured, he said “Once in awhile the miracle happens, but probably not.” He said that most likely the patient would slip back into his prior condition at some unpredictable time, most likely within hours, or maybe later. Nevertheless this was powerful evidence that a chi-gong healer is definitely able to influence a disease in a favorable way, and that chi-gong is a modality that deserves our attention. And it cannot be overemphasized that unless one pursues chi-gong to a ridiculous extreme, there is no way that it can be harmful.
- For anyone wishing to learn more about chi-gong, Kenneth S. Cohen is a highly knowledgeable, ethical, and scientifically inclined practitioner, teacher, and writer. His website address is www.qigonghealing.com. His book, “The Way Of Qigong”, is highly recommended, whether or not a qualified practitioner is available to help you.
- Acupuncture Acupuncture is another healing discipline that probably would not be harmful to an MDS patient, but I would not expect it to be particularly helpful unless it is administered by a chi-gong or Traditional Chinese Medicine practitioner, as a part of an overall program.
- Homeopathy Homeopathy would probably not be harmful, and even though it seems to help some patients in some situations, I would not expect it to benefit an MDS patient.
- Ayurveda Ayurveda, which originated in India, is one of the world’s oldest medical art forms. It is a valid discipline, but some of those practicing it in the U.S. have had minimal training and have been certified by an organization started by the Maharishi Mahesh Yogi of Transcendental Meditation fame. This training program has also been a big money-making enterprise for the Maharishi. There are, however, legitimate practitioners, but this system relies heavily on the prescription of herbal remedies and your hematologist might not approve of that approach since there would seem to be the possibility of the herbs doing harm. The same holds true for Traditional Chinese Medicine.
Interacting With Your Doctor
Having determined that your doctor is professionally competent, what else is important? Most patients want a doctor with whom they feel they can communicate well. Communication problems can stem from language barriers, or cultural differences, or some people, doctors included, are just not good communicators. If your doctor is foreign-born and either speaks with such a heavy accent that you find it hard to understand him, or seems culturally predisposed to not communicating with patients, consider changing doctors. Political correctness is not a consideration here. If your doctor speaks intelligibly, but you feel you just don’t communicate well, you might consider diplomatically bringing this up with the doctor. Your doctor will probably make more of an effort in this regard. In fact, bring up anything that makes you unhappy with regard to your care. Do not hesitate to ask the tough questions. Many doctors are not used to assertive patients, but most will respond favorably to a patient who is friendly, polite, and brings these things up in a non-hostile, matter-of-fact way. The key is friendly and polite, and conveying the attitude that you are anxious to work with the doctor as a team. Contrary to what some may think, doctors are people too, and if they think you are a nice and reasonable person, they naturally want you to like and approve of them. On the other hand, if your attitude comes across as hostile and demanding, you are much less likely to get a favorable response, because the doctor would probably rather have you go elsewhere.
Your doctor needs to understand and accept the fact that you may be involved with disciplines outside the realm of conventional medicine in an effort to help yourself. You need to make them aware that they are still your primary doctor, and that these outside efforts should be regarded as complementary rather that alternative. Your doctor needs to be reassured that you will not take any herbs or mega-doses of supplements without their approval.
This brings up the question of how to ask for this approval. It is best not to ask “What do you think about my taking …?” Or “Do you think it would help me to take…?” When the question is phrased this way they are very likely to say no. Rather it is suggested that you say something like “The naturopathic doctor thinks I would benefit from taking… Do you have any reason to think that it would be harmful?” The doctor is likely to think that the substance will not help you, but that is not what you asked, and there is a better chance that you will get approval if it is something you want to try.
You need to have a doctor who will appreciate the fact that you are working hard to do what you can to improve your health. Many doctors may think that some of the suggestions in this article are worthless, but hopefully your doctor is open-minded enough to realize that sometimes patients can benefit by forces that science does not yet understand. And the physician should also realize that none of the things suggested can do you any harm, as long as you check before taking anything.
We need to discuss the issue of second opinions. Anytime that you are not comfortable with your doctor’s recommendations you should consider getting a second opinion. The most likely times to request one would be at the time of diagnosis, and when treatments are recommended. Your doctor should be receptive to the idea of a second opinion, and should not object. It would be quite acceptable for your doctor to say something like “This particular issue is not really controversial, and I think you would be wasting your time, but it is certainly alright for you to get a second opinion if you wish”. Any serious objection to your obtaining one is a reason to change doctors. In seeking a second opinion, it is important to be sure that you will have confidence in it, so it is advisable to get it from one of the MDS Centers of Excellence, even if it means a trip of some length. Do not go with the attitude that the second opinion doctor has to start with a clean slate. Be sure to have your doctor supply copies of your records as well as blood and bone marrow specimens since that may avoid some repetition, and the response you have to any prior treatment may be important in helping decide what to do next.
If treatment is recommended, find out how much experience your first doctor has had with the recommended modality. If it is quite limited, and the MDS Center has had more experience, you might want to go there for the treatment. Or, if that is not feasible, find out if your doctor and the MDS Center are both willing to work together and have your primary physician administer the treatment under their guidance from afar.
An important thing to remember is that just because treatment is recommended does not mean that you must go through with it. After all, it is your health and your life at stake, and you are in charge. So ask the tough questions. It has been recommended because it might “help” you. Find out the percentage chance of it “helping”, and how much and what kind of help might be anticipated? For example, maybe there is a chance that it will improve your blood count, but it may make you feel bad in the process, and if you do get any help, how long would it be expected to last? And what are the chances that the treatment might make you worse? Chemotherapeutic agents run the risk of lowering your blood count, and it is already too low. If that happens, how do you decide whether or not to persist with treatment? If treatment lowers your blood count, what are the chances that it will recover or at least return to pre-treatment levels? In effect, what are the chances that treatment will shorten your life, and/or diminish its quality?
It is suggested that you find out the name of the medication being recommended and go on line to find out as much as you can about it, and then ask your doctor to clarify anything that you do not understand. Please realize that these questions are not posed to influence you not to have any treatment. Rather, since you will be making what may be crucial decisions, and by gathering all of the information that you can, you are in a better position to weigh all factors and arrive at a decision that is comfortable. Also, keep in mind that if you feel you have good doctors and they are recommending treatment, this factor should enter into the decision-making process.
Finally, on the issue of treatment, what should you do if you are offered the opportunity to participate in a clinical trial for a new drug? Again, you have to ask the tough questions. First, you need to know what the chances are that you will actually receive the drug being tested? Clinical trials almost always involve control subjects as well as subjects receiving treatment. Depending upon the particular study, you might receive the drug being tested, or you might receive another drug for comparison purposes, or you might get only a placebo. Your chance of receiving the drug being tested may be no better than one in four. You also need to know whether the drug is one that has already been tested, and if so, what were the results? And whether further testing involves a different dose? Perhaps it is combined with another drug? If so, has that drug been tested before and what were the results? You would also like to know what benefits might be anticipated, and what other risks are involved, while realizing that these factors may be quite uncertain with a new drug.
I truly believe that if you follow some of the suggestions in this article, that at the very least you will feel better. Actually, how you feel is probably more important than your blood count. Hopefully by following some of these suggestions you will help your situation to stabilize, or maybe even improve, and thereby allow you more time. Not only is more time desirable in itself, but also each day brings you closer to new developments which might offer you more help yet.
Whether you decide to follow any of these suggestions or not, you must read the book “Spontaneous Healing” by Andrew Weil, M.D. Dr. Weil is a graduate of Harvard Medical School who has devoted his career to the study and practice of complementary and alternative medicine. Dr. Weil is Chairman of the Department of Integrative Medicine at the University of Arizona Medical School. To get acquainted with his work, visit his website at www.drweil.com. And be sure to read “Spontaneous Healing”. It will encourage you with the knowledge that you can get better, and give you the hope that you need to begin the process.
By Bill Bryant, MD
The MDS Foundation would like to thank Dr. Bryant for sharing his unique insight with other MDS patients.
The author of this article, Bill Bryant, is 71 years old and has been retired since 1999 after practicing for 34 years as an ophthalmologist (eye physician and surgeon) in Sacramento, CA. In January of 1998 he was told that he had refractory anemia, a type of MDS, with low red cells, neutrophils, and platelets. A few months later it was determined that he also had large granular lymphocyte leukemia, an even more rare condition for which there also was no established reliably effective treatment. The relationship between the conditions is uncertain, but about 5% of patients with this type of leukemia also have MDS. Because of the rarity of this situation, the prognosis was unknown. Since then he has had no treatment other than self-imposed adherence to some of the disciplines described in this article. Blood counts gradually went down for the first few years, then stabilized, and for the past two years have been improving, so that at present they are not notably worse, and in some respects are slightly better than at the time of diagnosis over seven years ago. He still walks about 2 ½ miles daily, except for two days a week when he walks 18 holes of golf on full-length courses. He spends considerable time studying complementary and alternative medicine. He feels that he is pretty much normally active, though he does tire more easily and requires more rest than he did prior to these diagnoses.
Regarding this article, Dr. Bryant says: “What I wrote is what I believed when I wrote it, but things change so fast that I reserve the right to change my mind about anything at any time, including yesterday”.