Being diagnosed with WM is not an end – it’s a beginning! Before reading further about all the information that the IWMF provides to help you deal with WM, we encourage you to take a couple of minutes to watch a short video (click on the photo on the left). In the video, Peter DeNardis reflects on the impact the diagnosis has had on him and his family, and how he and others in the IWMF community are able to thrive in spite of, or perhaps even because of, the disease. Peter was first diagnosed in 2003 at the age of 43, and has had multiple relapses since them. Still, he finds time to maintain his full-time job, volunteer for the IWMF, and pursue his hobby of amateur wine-making.
Because 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.
Practice Healthy Habits
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.
Stay well hydrated by drinking lots of water and other non-carbonated, decaffeinated, non-alcoholic liquids every day. 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.
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. For an instructive (and entertaining) discussion of cancer related fatigue and tips for coping with it, the Lymphoma News Today website features a DocMikeEvans video called “Cancer Related Fatigue(link is external).”
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.
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 (1) indicated vaccines should ideally be administered before cancer treatment begins; (2) live vaccines are not indicated due to risk of severe vaccine-induced infections; (3) influenza shots should be given annually, and both pneumococcal vaccines should be administered according to a recommended schedule; (4) the newer Shingrix vaccine for zoster (shingles) is the safer and preferred one over the older Zostavax vaccine; and (5) family members and close contacts of cancer patients can be safely vaccinated with most, but not all, live vaccines. For more detailed information on vaccination for cancer patients, click here(link is external).
In addition to your hematologist-oncologist, include a general practitioner or internal medicine physician on your healthcare team. Continue to have regular checkups and screenings for other diseases, including other cancers, and be attentive to any other chronic conditions that you might have. WM patients should have regular dilated eye examinations at least annually, and more often if their IgM levels are high, because of potential eye problems related to hyperviscosity (increased blood thickness). Because peripheral neuropathy is present in about 20-30% of WM patients, a neurological examination at diagnosis should be considered to evaluate whether or to what degree peripheral neuropathy is present. Depending on the findings, regular follow-up neurological examinations may be of benefit. Consider having prophylactic medications available, especially if you are going to travel. These might include a broad spectrum antibiotic, an anti-viral, and something to use for colds or flu. You should also consult your physician if you are planning to travel to unusual or exotic destinations where specific disease alerts might be in effect or where additional vaccinations are required.
Above all, react immediately when something is not right. If you are suffering from noticeable changes such as fatigue, weight loss, or pain, don’t “tough it out.” Contact your healthcare team.
Educate Yourself and Your 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.
Be a Proactive 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.
Learn How to Cope with Your Cancer Diagnosis
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, and how you can adjust your work schedule and reduce stress during treatment. For helpful information on these and other aspects of coping with cancer while working, visit the Cancer and Careers website(link is external).
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.
The American Cancer Society offers several online guides for cancer patients and their families. One has answers to commonly-asked questions(link is external) that come up when one confronts a cancer diagnosis, while others discuss the emotional side effects(link is external) commonly experienced by cancer patients and offer suggestions for healthy ways to deal with these feelings.
The CureToday website provides a video resource called CureConnections to help answer your questions regarding a cancer diagnosis. You can search here(link is external) for videos on various topics including nutrition advice, financial and employment concerns, the role of a caregiver, and more.
Don’t be hesitant to accept physical and emotional assistance from those who offer it and consider professional help if you need it to get through difficult moments.