Image: Fatigue can be a symptom for many MPN patients.
This page covers MPN symptoms and management.
- What are the main symptoms experienced by MPN patients
- How to measure your symptom burden
- What evidence based treatments are available
- Ways to deal with pruritis (itching)
- Ways to deal with fatigue
Some MPN patients experience few if any symptoms and their MPN is diagnosed incidentally. Others can find their MPN symptoms very distressing, especially itchiness (aquagenic pruritis) after a bath or shower.
Fatigue, headaches, redness in feet and hands, aches and pains in the spleen area or bones, even itchiness can often be alleviated or even resolved with approved MPN treatments. It is important to discuss your symptoms with your health care professionals (GP, haematologist, haematology nurse) and follow their advice as symptoms may reduce once appropriate therapy is underway.
Therapy for MPNs may cause symptoms (adverse effects) in some patients, and hence it is essential to work with your haematologist to find the most effective and well tolerated therapy for your MPN. This varies significantly between patients.
For some people, symptoms may persist, especially itching after a shower or bath, despite good control of their blood counts.
Symptom identification and treatment
What are the main MPN symptoms
- Night sweats
- Abdominal pain
- Feeling full quickly after eating (early satiety)
- Weight loss
- Bone pain
- Difficulty concentrating
A symptom score card has been developed to help monitor MPN patients’ disease and treatment.
It is available for download at: MPN10 Symptom Score Card
Further details are available at ‘The haematologist.org’
Image: the MPN Symptom score card can be a useful way to monitor symptom burden.
Symptom management and treatment
Below are a few suggestions that might help with symptom management.
- Manage cardiovascular health.
- Good nutrition is important. Eat a balanced diet including lots of fresh fruit and vegetables, lean protein and whole grains, eg a low inflammation diet such as the Mediterranean diet is ideal.
- Maintain a healthy weight. If you’re unsure about what is a healthy weight, this comprehensive study details how a higher or lower weight can impact MPN symptoms.
- Drink plenty of water and prevent dehydration by avoiding excessive alcohol and caffeinated drinks.
- Exercise regularly – this can reduce the risk of heart disease, stroke and diabetes as well as improve fatigue. This seem counterintuitive but is backed up by several studies.
(Check first with your doctor if you haven’t exercised for some time. Your doctor may recommend an exercise physiologist).
This article from oncologist Dr Ranjana Srivastava also explains the benefits of exercise on longevity for cancer patients.
- Maintain your muscle mass to help keep your cholesterol and blood sugar within normal limits.
- Consider wellness activities such as yoga, aerobic activity, strength training, meditation, massages, support groups, improved nutrition etc – an international study of hundreds of MPN patients showed wellness activities had a pattern of decreased levels of symptom burden, fatigue, depression, and a higher quality of life for MPN patients. (Survey of integrative medicine in myeloproliferative neoplasms – the SIMM study).
- Get enough sleep – this is important for a healthy immune system.
- Have all the regular health-screening tests. Basic tests to have from age 40 include checking your weight, cholesterol and fasting blood sugar. Other essential tests are mammograms, cervical cancer tests and prostate cancer screening.
- Control stress.
- Stop smoking.
The UK’s MPN Voice’s website was the source of some of the above information.
Our own MPN AA website also provides a suite of pages with more information on the above topics – see LIVING WELL.
Itching – aquagenic pruritis
New Zealand’s reputable dermatology website has useful information about aquagenic pruritis https://dermnetnz.org/topics/aquagenic-pruritus.
The Cleveland clinic website in the US has further information https://my.clevelandclinic.org/health/diseases/22516-aquagenic-pruritus.
- Non-sedating antihistamines.
- Addition of sodium bicarbonate (baking soda) to the bathwater.
- Phototherapy (ultraviolet).
- Topical capsaicin creams – this active ingredient (from capsicum/chilli peppers) can help relieve itching and pain after contact with water. There are a number of different creams available from chemists.
- Beta-alanine (both websites caution that it’s not clear how these supplements work, but some people have reported relief when using them.)
- Ruxolitinib (which is available for some MF patients in Australia).
- Baby oil, coating your skin before showering can help give your skin a protective barrier.
Following on from the above suggested remedies, we also offer some insights from Australian patients.*
1. Beta alanine*
Quite a few Australian patients have reported they have found relief using the supplement beta alanine. MPN patients report relief from a small dosage of half a teaspoon a day. It can be bought from health food shops.
Other MPN patients find an over the counter antihistamine is helpful. These are available from chemists.
* You must seek the advice of your haematologist/GP before trying either of these anecdotal remedies to relieve your pruritis symptoms in case there is any contra-indication in your particular circumstances.
Many MPN patients also suffer from fatigue. Australia’s Leukaemia Foundation has some very helpful information to support you in combating cancer related fatigue including two informative short videos which cover what it is, how it can affect your life, and what you can do about it, including practical tips and strategies. See HERE.
Counter intuitively, anecdotally, many of us find that going for a walk is more effective at managing fatigue than sitting and resting. This is increasingly backed up by the evidence. https://www.nhs.uk/live-well/sleep-and-tiredness/self-help-tips-to-fight-fatigue/
The following informative article is from the Global MPN Scientific Foundation and is specifically about exercise for MPN patients.
Be your own advocate
Read your blood test results in detail and track them. If you feel something is wrong, or you have new or worsening symptoms, make sure you let your doctor know of your concerns so that this can be addressed.