Living with Waldenstrom’s Macroglobulinemia

Because Waldenstrom’s macroglobulinemia (WM) is typically an indolent (slow growing) cancer, it is possible to achieve a good quality of life for long periods while living with the disease. The following are useful suggestions, many of them common-sense items, to help patients cope physically and emotionally with WM and improve their overall health status while doing so.

How can I protect my immune system?

WM patients have suppressed immune systems, and treatments for WM may temporarily suppress those systems even more. That translates into increased vulnerability to infections and may require more intensive medical treatment to facilitate recovery. What may be a minor respiratory or wound infection in a healthy person can become a major medical event for a WM patient – so be vigilant and alert your healthcare team to a potential problem. Make it a habit to wash your hands frequently with soap and water and carry antibacterial cleanser and antibacterial wipes in case you don’t have access to soap and water. Try to avoid close contact with others who may be exhibiting symptoms of a cold or the flu.

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What Type of Diet and Exercise Plan Should I Follow?

Why is staying hydrated important for cancer patients?

“Fluids carry nutrients to cells, flush bacteria from the bladder and prevent constipation. Staying hydrated makes treatment side effects less severe and lowers your chances of missing or delaying cancer treatments. It also means fewer trips to the emergency room for hydration through an IV.”
– MD Anderson Cancer Center

To maintain proper hydration, drink lots of water and other non-carbonated, decaffeinated, non-alcoholic liquids every day. Drink electrolyte beverages as they contain water enhanced with minerals like sodium, potassium, and calcium. Choose juices, milks, lemonade, iced tea and even popsicles that are either unsweetened or lightly sweetened.

 

Stay Hydrated

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What Type of Diet and Exercise Plan Should I Follow?

How Will Good Nutrition Help Me During Manage My WM Symptoms?

There are no special diets or dietary substances that can be used to treat WM. Instead, follow recommended guidelines for optimal health, including a healthy balanced diet, high in fruits, vegetables, and whole grains and low in fatty foods and red meat. Adopt a regular program of exercise in keeping with your abilities and in consultation with your physician. The American Cancer Society offers guidelines(link is external) intended to help cancer survivors make informed choices related to nutrition and physical activity. It is also important to reduce stress and get adequate amounts of sleep.

 

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What is the Best Exercise for Me?

Guidelines recommend regular aerobic exercise – such as walking, jogging or cycling, and strength training – such as lifting weights or using resistance bands, for patients whose cancer has not spread beyond its initial site.
Aerobic exercise helps strengthen the heart and lungs. Resistance exercise strengthens the muscles.

It’s been shown that staying physically active improves symptoms and side effects in patients undergoing chemotherapy, radiation therapy, or both. It also helps those who have surgery recover faster with fewer complications.

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How Do I Manage Cancer Related Fatigue?

Surprisingly, the most common medical issue reported by cancer patients is not pain, depression, anxiety, or even loss of appetite – it is fatigue. Cancer related fatigue is not the usual kind of tiredness caused by the stresses and strains of everyday life, but instead tends to last longer and is not relieved by rest and a good night’s sleep. CRF can affect many areas of life, including work, family, social life, and daily activities. It can occur at any time, before, during, or after treatment.

It is important for you to talk with your doctors, nurses and other members of your healthcare team if you experience signs of fatigue before, during, or after treatment. Treatment, along with lifestyle changes, can make an big difference and help improve your energy level.

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What About Complimentary and Integrative Medicine?

If you are investigating the use of complementary and integrative medicine as an adjunct to conventional treatment, be cautious. While a general-purpose multivitamin should be safe, mega-vitamins, over-the-counter medications, and so-called health food remedies should always be discussed with your physician. Some of these substances may alter the effectiveness of conventional treatment for the disease or may worsen certain side effects from treatment.

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What are the Suggested Vaccinations That I Need?

Make sure that you receive the appropriate vaccinations. The responsibility for administration of these vaccines is shared between your oncologist and your primary care provider. Certain vaccine-preventable diseases have higher incidence rates among cancer patients and are associated with worse outcomes. The Centers for Disease Control and Prevention and the Advisory Committee on Immunization Practices recommend certain vaccines for routine use in adults, including those with cancer. Key points include:
• Indicated vaccines should ideally be administered before cancer treatment begins
• Live vaccines are not indicated due to risk of severe vaccine-induced infections
• Influenza shots should be given annually, and both pneumococcal vaccines should be administered according to a recommended schedule
• The newer Shingrix vaccine for zoster (shingles) is the safer and preferred one over the older Zostavax vaccine
• Family members and close contacts of cancer patients can be safely vaccinated with most, but not all, live vaccine.

A gloved person administering a vaccination

How do I Educate Myself and My Caregiver about WM?

Make sure that your caregiver has as much knowledge about your condition as you do. At times of treatment particularly, you may become stressed and fatigued or experience other side effects, and your caregiver is your lifeline to obtaining help and communicating with your healthcare team, especially in emergency situations.

  • Attend the annual IWMF Educational Forums and ask questions of the medical presenters. Go to the breakout sessions and spend time with other WM patients at the Forums to learn how they are coping
  • Find a local IWMF Support Group and attend meetings as regularly as you can. Support Groups can offer a wealth of information and the opportunity to network with other patients who are going through the same experiences as you are
  • Download publications from our website, or if newly diagnosed go here

A gloved person administering a vaccination

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How Can I Be a Proactive WM Patient?

In addition to maintaining healthy lifestyle habits and educating yourself about WM, you should establish good communication with your healthcare team. Your hematologist-oncologist will undoubtedly want to establish a regular schedule for visits, even if you are not receiving treatment. Let him or her know about any new or unusual symptoms you might be experiencing and ask questions if there is something you don’t understand. Make sure that other members of your healthcare team receive copies of reports from each other so that they can work together efficiently on your behalf. There may be times when you would like to have a second opinion, particularly if you are considering different treatment options. Tips on communicating with your healthcare team and information about obtaining a second opinion can be found here.

Access to your personal health information is critical to ensure that you receive timely, safe, and effective care and treatment. Although electronic storage of medical records is increasing, you are entitled to your medical records, and you may want them for your own use as an aid to keeping track of your health status. There are also documents that you may want to complete now for possible future crisis situations. You can find a list of important records and helpful documents to consider keeping here.

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What Resources are Available to Help Me Cope with My Cancer Diagnosis in the Workplace?

A cancer diagnosis can be especially difficult when it occurs while you are still working or if you are attempting to find a job or change careers. Just a few of the important issues to consider include:
• How to share your diagnosis with your employer and your co-workers
• How your treatment could affect your job performance
• Your legal and financial rights in the workplace
• How you can adjust your work schedule and reduce stress during treatment

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How Do I Deal with My Emotional Health After My Diagnosis?

There is no question that a cancer diagnosis is a life-altering experience. It is 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. There are many websites and blogs to help cancer patients deal emotionally with the diagnosis and the effects of treatment.

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