This is the fifth part of our series about the condition based on our patient booklet “Fast Facts for Patients: Waldenström Macroglobulinemia”. This blog post deals with common feelings when diagnosed with Waldenström macroglobulinemia (WM) and how you can help yourself.

Common Feelings When Diagnosed

For most people, it is a shock to be diagnosed with a very rare disease with an unpronounceable name. The prospect of having a life-limiting condition can be frightening.

Diagnosis may be a relief, though, particularly if you have had a lot of symptoms. Treatment can start to improve wellbeing.

If you do not need treatment right away, the lack of action after receiving a cancer diagnosis can be disconcerting if an active monitoring approach is recommended.

Anyone who receives a cancer diagnosis typically feels overwhelmed and powerless as they grapple with many tests and a new vocabulary surrounding the condition. WM is a complex disease, with many strands and possible consequences.

Connecting With Others

It is very helpful to find sources of reliable information and support. You can do this yourself or a family member or friend can do it. There are many sources of information available online. It is important to look at accurate and up-to-date information.

Waldenström macroglobulinemia: useful resources

Helping Yourself

Get a Clear Picture

It is recommended that you and/or a family member or friend find out what to expect after diagnosis, depending on whether you are being actively monitored, treated or monitored after receiving treatment. It is advisable to seek answers to your questions from your clinical team and keep records of your discussions, medications and treatments.

Make sure you understand why you are receiving different medications (are they part of your chemotherapy or supportive medications?). From time to time, ask your doctors to review whether you need to continue your medications, especially those that were added during your WM treatment.

Don’t feel shy about asking questions to help you stay safe and well as you live with your WM. If necessary, seek a second opinion.

Minimize the Risk of Infections

It is important to remain vigilant about possible infections that you develop or encounter. What you do about them depends on whether you are on or off treatment, whether you have had previous treatment and, if so, how long ago. All these factors can influence the state of your immune system. This is even more crucial now in the COVID-19 era.

It is important to remain vigilant about possible infections that you develop or encounter. What you do about them depends on whether you are on or off treatment, whether you have had previous treatment and, if so, how long ago. All these factors can influence the state of your immune system. This is even more crucial now in the COVID-19 era.

Taking sensible precautions to prevent infection, such as mask-wearing, hand-washing and avoiding crowded indoor spaces, is worthwhile.

Maintain a Good All-Round Diet

There is no evidence that special diets are of benefit for WM. In general, a varied and wide-ranging diet is the best way to obtain the nutrients you need. At times, you may need to adapt your diet. Chemotherapy may reduce the number of white blood cells called neutrophils, so it may be helpful to stick to a “neutropenic” diet during chemotherapy. When your blood cell counts are normal such a diet is not needed. Consult with your clinical team if you are unsure.

Certain vitamin deficiencies are common in WM, for reasons unknown. These vitamins (B12, folate, vitamin D) are easy to replace. If you are developing anemia that cannot be accounted for by a buildup of LPL cells, it is worth checking your vitamin B12 and folate levels. If they are low, they can be replaced by tablets or injections. Another correctable cause of anemia in WM is iron deficiency. This can be remedied by intravenous infusions of iron.

It is also worth checking your vitamin D level yearly to ensure you have enough, as it is important in so many physiological functions, including bone health. It is one of the few vitamins worth taking regularly (unless you have a specific reason to avoid it). A reasonable dose is 1000 IU/day.

Any diet or supplement that recommends amounts that are in excess of the recommended daily allowance (RDA) should be avoided unless they are prescribed for a specific reason by a doctor. Such excesses can affect WM in ways we cannot predict, and if you are on chemotherapy they can interfere with the way the treatment works.

Keep Up the Exercise

Regular physical activity is beneficial for overall health. If you are living with WM, there are even more reasons to maintain your fitness to help keep your heart and lung function at good levels to tackle fatigue, stave off infections and cope better with chemotherapy treatments, if and when they are needed.

Moderate, regular exercise that is suitable for you is the best thing to aim for. This will vary from person to person. A daily walk is better than nothing at all. Apart from improving physiological fitness, it raises the spirits and, if outdoors, connects you with nature.

It is equally important not to overstretch yourself, especially during or after therapy, until you feel up to it. Having “good” and “bad” days is a common experience in WM and may have physical and psychological/mood origins.

If you have a medical condition, such as heart disease, high blood pressure or diabetes, it is important to seek advice from your doctor if you are unsure.

Peripheral neuropathy can impede your ability to exercise, for example if you have numbness or loss of balance or weakness in your limbs. Expert review is recommended to determine the nature and cause of the neuropathy. Appropriate treatment should be given if needed. There are many medications to help with the management of pain. Discuss your situation with your doctor, and seek out physiotherapy and occupational therapy as needed.

Rest When You Need to

Fatigue is a very common symptom in WM and has many causes. Furthermore, these causes can change over time, depending on your general health, the medication you are receiving and the status of your disease. It is important to share your concerns with your clinical team so that the matter can be addressed as effectively as possible.

There are times when the best thing to do is rest. If this is the case, it is important to give yourself the time and space to do so. There is lots of information about management of fatigue. Make sure you look for guidance from reputable sources.

 

Information based on Fast Facts for Patients: Waldenström Macroglobulinemia (Karger, 2022).

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