The Josep Carreras Leukaemia Foundation, in collaboration with the Grünenthal Foundation, has published the guide ‘Pain in the haematological-oncological patient: before, during and after treatment’. This document provides recommendations for the management of pain associated with haematological diseases at different stages of treatment, as well as at an emotional level due to the psychological and functional impact it has on patients.

The particularities of haematological diseases, such as leukaemias, lymphomas or multiple myeloma, among others, mean that patients and their physicians face different challenges than those associated with solid tumours, although the latter may also occur in some cases of haematological diseases, such as lymphomas. The document provides a clear roadmap for addressing the pain that accompanies these diseases, emphasising the need for a differentiated and specialised approach.

The Guide, which also refers to a Grünenthal study involving 49 patients in Spain (549 in total across Europe) with Oncological Neuropathic Pain (ONP) on how this type of pain affects their lives, reveals that in Europe there are 2.7 million new cases per year. The document shows that 1 in 5 patients have severe pain on a daily basis, 47% have had to miss work or school and 12% have given up their profession due to pain. In addition, on an emotional level, 37% say it has affected their self-esteem.

Given these data, the document stresses that many of the pains that a patient may experience are manageable, so controlling them and improving quality of life is a fundamental objective of treatment. The publication highlights that in addition to medication, an adequate and balanced diet, together with physical exercise, can alleviate some pain, as well as the management of fear and uncertainty, which should always be covered with specialised emotional support. For this reason, the Guide urges patients to see their doctor for referral to a nutritionist and physiotherapist to assess what type of diet and exercise may be appropriate to improve their situation.

Finally, the publication emphasises the importance of physical exercise during the course of cancer treatment, as bone density can decrease, leading to osteoporosis, the main causes of which are medical treatments and prolonged immobility. A significant reduction in bone density can compromise the structural integrity of the bone, especially if stability is lost, and physical activity should be increased if there are signs of osteoporosis. Bone deterioration due to so-called lytic lesions is especially significant in multiple myeloma patients.

Alexandra Carpentier, head of Patient Experience at the Josep Carreras Leukaemia Foundation, stresses “the importance of informing the haematologist about pain as the patient often assumes that pain is a “normal” part of cancer. It is very important to treat pain as soon as it appears or prevent it before it starts to wreak havoc. Once pain becomes severe, it can be more difficult to treat. In addition, many of the pains a patient may experience are manageable, and controlling these pains and improving patients’ quality of life is a key goal of treatment.

Thanks to the Grünenthal Foundation for sponsoring this manual! We would also like to thank Alex Montesinos, oncology physiotherapist (@oncotherapybcn) and Raquel Sánchez, integrative dietician specialising in oncology (@ahora_que_como) for their collaboration!