Did you know?

The IWMF raised more than five million dollars for WM medical research

Did you know?

The IWMF raised more than 60 support groups in North America and nearly 20 others world-wide

Did you know?

The IWMF has a current worldwide membership of nearly 4,000

Did you know?

IWMF-TALK is a wonderful place to share information and learn from other survivors

Did you know?

Each year 1,500 new cases of Waldenstrom's macroglobulinemia are diagnosed in the USA

Did you know?

Volunteers at the IWMF Telephone Lifeline are waiting to share their experiences with you

Did you know?

You can order DVD recordings of past WM Educational Forums online or by mail

Did you know?

All IWMF programs and services are funded by WM survivors, caregivers, friends, and family

Living Well with WM

There are many patients with Waldenstrom’s macroglobulinemia (WM) who are living well and enjoying life with a degree of contentment that may seem surprising to others.

 

When patients are first diagnosed with WM and learn immediately that this is a rare, slow growing, incurable disease, they are usually too numb to remember more than that. Some hear the statistics concerning the prognosis for WM patients and are convinced they should be putting their affairs in order. Others are upset when they learn that they will not be treated immediately because they believe that the first thing you should do following a cancer diagnosis is try to kill the cancer cells before they multiply. The truth is that many WM patients are still alive and well ten, twenty, twenty-five years after diagnosis. In fact, once a WM patient has investigated the disease further by contacting the IWMF, reading the IWMF Info Pak, joining a support group and meeting other WM patients, he or she understands that WM patients may very well be around for a great many years.

 

The sooner you can adapt to being a WM survivor rather than a WM patient, the sooner you will begin to think about a future and to make changes in your daily life–changes such as spending more time with loved ones, regular exercise, a better diet, and taking time to "smell the roses," all in an effort to hold on to a good quality of life for the remaining years.

 

The following is a list of things that you (patient, caregiver, or family member) should know in order to best ensure that the patient will survive with the quality of life he or she wants.

 

Daily Habits »

  • Keep yourself well hydrated by drinking lots of water or other non-carbonated, decaffeinated, non-alcoholic liquids each day in order to flush your kidneys.

  • Limit exposure to people who have colds. Be mindful around children, especially during the cold and flu seasons. In public places (restaurants, church, etc.) stay away from children and anyone else who is coughing or sneezing. Ask to be seated elsewhere. When flying, consider wearing a mask. Don't be complacent and think that precautions are not necessary. Your life depends on being careful. You have a depressed immune system from WM.

  • Develop a habit of washing your hands frequently. Always carry anti-bacterial cleaner and anti-bacterial wipes in case you cannot access soap and hot water--the best sanitizing agents.

Best Practices For the Long-Term »

  • Make sure that you and your family members get a flu shot every year. The flu shot may or may not work for you, but it will probably work for your family and, thereby, doubly protect you.

  • Be proactive if you get an infection. With a depressed immune system, a "simple" bronchial infection can easily become a life-threatening pneumonia 

  • If a wound is not healing properly, seek medical attention quickly.

  • Form your own survival team. You have to be the head of the team. Nobody cares as much about the issues as you do. Make sure that your caregiver has as much knowledge about your condition as you do. At times of treatment with steroids and other chemo drugs you may become overwhelmed with all the information you need to keep straight. Your caregiver is your link with sanity and good judgment.

  • We usually get our local oncologist by circumstance. If that oncologist does not meet your needs, change your oncologist. Make sure you have a physician you can count on in a crisis.

  • Find a WM specialist who can work with your oncologist in deciding your treatment. A WM specialist is a medical doctor who specializes in researching and treating WM. Because WM is a rare disease, many oncologists see few, if any, patients with WM in their entire career. A physician who has treated a few cases is not a specialist.

  • Have a good internal medicine physician. Most of us are in this for the long haul. You need to keep up your general health.

  • For many WM patients, elevated serum viscosity can become a serious issue; it is highly recommended that you have annual eye exams with your optometrist and/or ophthalmologist to assess the status of the veins in your eyes.

  • Have regular check-ups with specialists for any other chronic condition you may have.

  • Don't overlook the nurses--they know as much about symptom control as doctors.

  • Regard all your doctors, nurses, and caregiver as a team and make sure that the team members all get copies of reports from each other. This is your team--make sure they can work together and remember to be proactive as the team leader.

Be a Proactive Patient »

  • Make it clear to each physician you see that you are a patient who wants to know that your questions will be answered, who wants to be copied on all test results, and who wants to be involved in treatment decisions. Not all patients are this proactive and it is important to be up front about it.  Your issues, including your quality of life priorities, must be considered by everyone on your team.

  • Keep copies of your test results and other file records from all your doctors organized by topic. By law, patients are allowed to have copies of their medical records and they cannot be withheld from you.

  • If you do not understand an explanation by your physician, ask that it be explained again and continue asking questions until you understand the answers regarding any issue involving you and your disease.

  • Prior to your medical appointments, make a list of questions. At your appointment, explain that you don’t want to forget anything that is said and that you will take notes if you need to. Most doctors do not favor being taped during an appointment. Notes are very useful for remembering what is said. If you can bring someone with you to take the notes, that is even better.

  • It's okay to say, "Let me think about that" when your oncologist tells you that "we're going to start treatment immediately.” WM is a very slow-growing cancer, and you need to think, research, talk with others, and even get a second opinion before agreeing to treatment. Ask for treatment options (that's plural) and ask about the pros and cons of each one. Ask why your oncologist favors the treatment being recommended. You may want to check with one of the WM experts listed below.

  • When something is wrong, complain about it. When something hurts, complain about it.

  • When in the hospital, don’t be afraid to question the nurses and doctors. Verify that you are receiving the correct medications and the correct dosage of those medicines. Verify that you truly do need those extra blood draws and medical tests while in the hospital. Be sure that medical personnel have washed their hands before examining or treating you. If your situation needs special handling (such as keeping blood warm if you have cold agglutinin disease), don’t be afraid to always remind doctors and nurses of your special needs--it saves much time and trouble for everyone in the long run. You or your advocate should remain vigilant in this regard--the hospital staff does its best, but there are many other patients besides you to care for. You are the one who knows your own body and condition.

  • Question anything that you suspect is not correct, especially with technicians and office staff. But don't become a constant complainer about everything. An office policy or practice will probably not be changed just because you don't like it.

Educate Yourself (this may refer you, your spouse, or a family member) »

  • Attend at least one IWMF Educational Forum. Ask questions of the medical presenters. Go to the breakout sessions and ask questions. Spend time with other WM patients at the Forum and learn how they're surviving.

  • Attend a local support group as regularly as you can. There are many things to learn and you need to feel "part of" a group of survivors. Even physicians can't give you what other survivors can--their experience.

  • Read the booklets and articles in the IWMF Info Pak for the newly diagnosed. If you don’t have the Info Pak, you can order one online by clicking here, or by calling the office: 941-927-4963. The Info Pak is free.

  • You're here at the IWMF website - that's a great start!  You'll find that this website has an incredible amount of up-to-date information that is essential to you and your family.

  • Join a great group of patients sharing treatment results, personal WM-related experiences, and many other issues on IWMF-Talk. You can join by e-mailing a request to:

Guide for Caregivers (click here for a link to more information)»

Maintain Your Immune System »

Your immune system is defective, but it is not dead. Optimize it with healthy habits:

  • Reduce stress. This is important, as stress can further depress the immune system. Find ways to chill out and relax (in spite of it all).

  • Exercise. This is important both physically and emotionally. Find ways to exercise within your limitations. Low impact is best.

  • Hold to a healthy diet. Don't go overboard but try to avoid stressing your body with "bad" food choices.  You can find usefil diet tips and recipes in the editions of our Torch newsletter.

  • Consider the use of a physician-approved multi vitamin to ensure that your systems are not deprived of any essential nutrients.

Keep Medical Records »

  • Trends are important. As you collect your test results, track the important markers (good and bad) so that you will see any trends developing. Learn which markers are significant and use a spreadsheet to visualize trends. Keep all your records in chronological sequence in one or more binders so that you can easily access them when needed.

  • Keep a medical card in your purse or wallet with a list of all current medications and dosages and a list of physicians with their phone numbers. Keep it updated.

  • Fill out important forms for possible crisis times: Living Will, Medical Power of Attorney, and Do Not Resuscitate (DNR). It's good to have them even if you don't need to use them now.

  • Five Wishes is a booklet and online resource you can use to let your family and doctors know: who you want to make healthcare decisions if you are unable to; the kind of medical treatment you want or don't want; how comfortable you want to be; how you want people to treat you; and what you want your loved ones to know.  To complete your personalized Five Wishes online and print it, go to Five Wishes online. Or, if you would like a free copy mailed to your home, please email the IWMF Office () with your request.

Know Your Doctors' Limitations »

  • Doctors and nurses are frequently overworked, and hospitals and clinics understaffed. This is often the reality of medical care today, and you need to learn how to work with it to your best advantage so that you get the care you need. 

  • Nurses, technicians, office staff, and even doctors sometimes make mistakes, and you as a patient need to be on the alert. Mistakes that have happened to other patients include:
    • Tests that should be ordered are not ordered
    • Wrong or inadequate instructions are given for imaging studies
    • A health care professional does not recognize a trend (a good reason why you need to track trends independently)
    • Miscommunication occurs between doctor and staff
    • A prescribed medication proves to be an instance of over-medicating or under-medicating 

  • Your local oncologist may have a "treatment philosophy" for WM and your condition, a philosophy based on his or her experience with particular drugs.  If, drawing on what you have learned about WM, you wonder why a certain drug or treatment is being suggested for you, ask about it. When treatment options are under discussion it is time to ask for advice from one of the WM experts who is willing to speak with your oncologist and discuss your treatment and to talk with you about your treatment. You need to feel free to discuss matters with your oncologist if you think he or she is following a "treatment philosophy" rather than a regimen based on your specific condition.

  • The WM experts are listed in the 'About WM' section under 'Finding a Doctor.' Remember that WM is a very rare blood disease.  A WM expert  conducts research in WM and sees many WM patients in a clinical setting. The experts' recommendations for your treatment are based on the latest research about the disease and on their experience with so many patients. Even when consulting by telephone, the experts' knowledge and experience enable them to assess the treatment and care appropriate for you, an individual patient. 

  • Some oncologists are unwilling to communicate with or take direction from another oncologist. If this is the case with your doctor, it may be useful to give him or her a Torch newsletter, some of the IWMF booklets on treatment, and copies of published studies. If your physician is unwilling to communicate with a WM expert or with other oncologists and if he or she rejects information provided by you or from published studies, then you should probably consider changing your oncologist.

  • You may feel that your local oncologist is either too aggressive or too conservative to suit your needs. In either case, if you feel that there is disagreement between you and your physician in regard to your treatment regimen, you will need to discuss this with him or her.  If it turns out that you and the doctor are not "on the same wavelength," then you should look for another oncologist. It is essential that patient and doctor be in agreement--your partnership may last a long time.

Early Warning System »

  • Testing is used to track the disease and for tracking the success (or failure) of treatments. It's also important to be tested when on a plateau so that you will get an early warning when the disease reappears.

  • Consider having prophylactic medications available, especially if you are going to travel. Consider keeping on hand a good antibiotic, an antiviral, and something to use for flu.

  • Above all, react immediately when something is not right. When you are suffering from noticeable changes such as fatigue, loss of weight, or pain, don’t “tough it out.” See your oncologist.

American Cancer Society Guidelines on Nutrition and Physical Activity »

In early 2012, the American Cancer Society published two sets of guidelines intended to provide findings of a group of experts in nutrition, physical activity, and cancer survivorship to help guide cancer survivors and their families in making informed choices related to nutrition and physical activity.

 

The two publications (which are provided here) are:

Coping and Courage »

(Adapted from “The Emotional Impact of a Cancer Diagnosis," American Cancer Society, 2008)


When you are told you have cancer, the diagnosis affects not only you but also your family and friends. You may feel scared, uncertain, or angry about the unwanted changes cancer will bring to your life and theirs. You may feel numb or confused. You may have trouble listening to, understanding, or remembering what people tell you during this time. This is especially true when your doctor first tells you that you have cancer. It is not uncommon for people to shut down mentally once they hear the word "cancer."


There is nothing fair about cancer and no one "deserves" to have it. A cancer diagnosis is hard to take and having cancer is not easy. When you find out you have cancer, your personal beliefs and experiences help you figure out what the diagnosis means to you and how you will handle it. As you face your own mortality and cope with the many demands of cancer, you may look more closely at your religious beliefs, your personal and family values, and what's most important in your life. Accepting the diagnosis and figuring out how cancer fits into your life is challenging.


After you are diagnosed with cancer, you may feel shock, disbelief, fear, anxiety, guilt, sadness, grief, depression, and anger. Each person may have some or all of these feelings, and each will handle them in a different way.


Your first emotion may be shock, because no one is ever ready to hear that they have cancer. It is normal for people with cancer to wonder why it happened to them or to think life has treated them unfairly. You may not even believe the diagnosis, especially if you don't feel sick.
 

You may be afraid. While some people fear cancer itself, others may be afraid of cancer treatments and wonder how they will get through them. Fear of pain and suffering is one of the greatest fears people with cancer and their loved ones have.
 

You may feel guilty. You may ask yourself if you could have noticed your symptoms earlier, or wonder what you've done that may have caused the cancer. You may wonder if you were exposed to something at home or work that led to cancer. Or you may worry that other members of your family will also get cancer. At this time we do not know what causes most cancers. But a few are known to be hereditary, or passed from a parent to a child. This means if one family member develops it, others in the family may have a higher risk of developing it, too. This can cause even more concerns for the person newly diagnosed with cancer.
 

You may feel hopeless or sad if you see cancer as a roadblock to a life full of health and happiness. It is hard to feel positive and upbeat, especially if the future is uncertain. Just thinking about treatment and the time it will take out of your life can seem like too much to handle. Feelings of sadness or uncertainty can be made worse by your experiences with cancer.
 

You may have a sense of loss linked to your cancer diagnosis and treatment. Cancer can change your sense of self, that is, how you think of your body, yourself, and your future. Grief is a normal response as you give up your old ideas of yourself and begin to develop ways to cope with the new, unwanted changes in your life. It may take time for you to become aware of these losses and changes. It can help if you share your grief with someone close to you. If there is no one near you that you want to confide in, you might want to see a mental health professional. Your feelings need care too, just like your physical body needs care.
 

You might feel angry. While some people may not outwardly express their anger and frustration, others may direct their anger toward family members, friends, or health care professionals. This is usually not done on purpose. If you are only trying to vent your feelings, let people know that you are not angry with them and know it is not their fault. Also let them know that you don't expect them to solve your problems–you just need them to listen.


"The best prescription is knowledge."
-- C. Everett Koop, MD, former Surgeon General of the United States


Some people believe it is easier to face the reality of a new or scary situation if they learn as much as they can about it. This is especially true when you are dealing with a complex group of diseases like cancer. There is often a great fear of the unknown and uncertainty about what is going to happen. Knowledge can help lessen the fear of the unknown. You can learn a lot about the type of cancer you have, its treatment, and your chances for recovery.


Be your own advocate. Even though people facing cancer cannot change their diagnosis, they can seek out reliable, up-to-date information and talk to family members, friends, and their healthcare team. Finding good sources of support can help people with cancer take control of their situation and make informed decisions.


It's important to work through your feelings about cancer because how you feel can affect how you look at yourself, how you view life, and what decisions you make about treatment.

 

You will not be able to change many things in your life. Focus on what you can change to gain a greater sense of control over your situation.


Delores, cancer survivor: "Daily walks and, later, running helped me keep my sanity after I was diagnosed."


Other things you can do to deal with your emotions:

  • Ask for support from family, friends, and others. Just having someone who cares and will listen to you can be very helpful. If friends or family members are not able to be supportive, find others who will. Health care professionals (such as social workers, psychologists, or other licensed health professionals) and support groups can be extra sources of support.

  • Get spiritual support through prayer, meditation, or other practices that help you feel more at peace. You may want the guidance of a chaplain, pastor, rabbi, or other religious leader.

  • Pay attention to your physical needs for rest, nutrition, and other self-care measures.

  • Find ways to express your feelings, such as talking or writing in a journal.

  • Allow yourself private time and space.

  • Walk or exercise. It is a good idea to talk with your cancer care team about your plans before starting a new exercise program or activity.

  • Find out what helped other patients and families cope with cancer, and/or talk with other people diagnosed with the same type of cancer.

  • Make changes at home to create a healthier environment, and/or talk with your doctor about making healthy lifestyle choices.

  • Feeling sad all the time, having trouble sleeping, or thinking about suicide are signs that you need professional help. Other symptoms that may need treatment include feelings of panic, intense anxiety, or constant crying. If you think you might need professional help, talk with your doctor.


In your journey with WM, consider also the following coping mechanisms:

  • View your diagnosis from a different perspective–it gives you a much stronger perspective on life and living than others who don’t have such a diagnosis; life becomes much more precious and meaningful–which is actually quite rewarding!

  • For most, the challenges of daily life lead to delaying the pursuit of special desires and endeavors and talents–a diagnosis with cancer, and especially with WM, can be viewed as quite liberating:
    • Assess what you’ve always wanted to do in your life and find ways to pursue those goals and activities
    • Assess what truly makes you happy and feel rewarded in life and pursue that. It could be volunteering and helping others, it could be gardening, it could be cooking, it could be artwork or crafts, or just spending time with family and friends

  • Your diagnosis with WM is NOT a death sentence. It is a life sentence in the best sense of the term–it affords you the unique opportunity to view life from the perspective of someone who is more certain of his/her mortality (regardless of our health status, each day we are all one day closer to death and could die at any moment from any cause). It allows you the opportunity to focus on what gives you joy in your life and work to reduce or remove what gives you the most pain.

  • Studies have shown that positive thinking and having a positive outlook on life, even in the face of a poor prognosis, go a long way toward prolonging your life with cancer and, most importantly, towards improving the quality of life you enjoy while you are truly alive!