Care and mobility considerations
First line treatment
People of working age and older ‘fit’ people
This group are likely to undergo high dose chemotherapy treatment and Peripheral Blood Stem Cell Transplant (PBSCT) or bone marrow transplant. Treatment and recovery for those who successfully undergo this treatment is likely to take 18 months to 2 years. During this period they are likely to have periods of being immunosuppressed and be unable to go out in public. Episodes of severe fatigue may endure for many months related to chemotherapy treatment and anaemia.
Some will be unwell and have care or mobility needs for about 3 months only - during the transplant and transplant recovery period. Others will develop needs related to chemotherapy side effects during their first course of chemotherapy, if this happens needs are likely to last through the first course and into the transplant period. Recovery from the transplant is likely to be more prolonged in this group and may take a year from completion of treatment. The main cause of needs is likely to be severe chemotherapy related fatigue.
About a third of people in this group will not respond to treatment well enough to progress to a PBSCT or bone marrow transplant – this group is also likely to develop needs both related to treatment side effects and the disease itself. Some may be terminally ill and have any of the symptoms in the relapsed group above. These cases are likely to apply under special rules.
People over 65 and people of working age who are ‘unfit’
This group may have any of the symptoms of myeloma, bone pain is especially common. Pain in the back or legs may affect mobility and or ability to bend. Fatigue is likely to be most severe in those with severe anaemia, immunosuppression, heart failure or renal failure. During the first 6 months of chemotherapy treatment about half will feel much better and go into remission. There are likely to be mild side effects of chemotherapy. Remission is likely to last for 18-24 months, beyond which point symptoms will recur and further treatment will be required. Those that do not respond to initial treatment are likely to have other treatments which may or may not be effective. Of this group as a whole about 55% will still be alive after one year.
Relapsed or recurrent myeloma
Mobility
These people are often quite disabled by bone pain, renal failure and drug side effects. Severe fatigue and reduced exercise tolerance related to any of the following may reduce the ability to walk-:
- Chemotherapy treatment
- Anaemia
- Renal failure
- Skeletal pain
- Fractures
- Peripheral neuropathy affecting the feet (drug side effect)
People who are immunosuppressed may be advised to avoid public places and public transport.
People with myeloma are likely to have bone pain which may be severe. If the site of pain is the back or the legs mobility may be restricted to a few yards or they may be unable to walk at all. If high doses of pain killers are required to control pain, dizziness and drowsiness associated with these may reduce mobility even if pain is well controlled. Those with spinal cord compression may be unable to walk at all.
Care
Severe fatigue may make activities of daily living difficult. Back pain may limit the ability to bend. Heavy lifting should be avoided because of the possible risk of fracture. Painful myeloma deposits in the upper limbs may reduce the ability to prepare food and self care. Activities such as climbing into the bath or shower and washing may require assistance from someone else because of pain, fatigue or dizziness.
Monoclonal Gammopathy of Undetermined Significance (MGUS)
There are no disabling effects associated with this condition.
Isolated Plasmacytoma of Bone
Radiotherapy treatment almost always successfully puts this disease into remission; however pain may persist after treatment even when disease is in remission. Typically treatment takes 4-6 weeks; recovery from treatment is expected within about 3 months. Myeloma commonly develops about 2-5 years after successful treatment. 1 in 10 will require further local treatment for recurrent disease at the site of their original tumour, no residual disability is expected.
Solitary extramedullary plasmacytoma
Radiotherapy almost always relieves the pain associated with this condition, no residual disability is expected. Typically treatment takes 4-6 weeks, complete recovery from symptoms and treatment is expected within about 3 months. Cure rates are good with 10 year survival of 70%. In the 10 years after treatment about 1 in 5 will develop multiple myeloma.
A small group of people who had a large tumour at diagnosis and who required surgery or chemotherapy in addition to radiotherapy treatment may develop needs during treatment related to treatment side effects. They are unlikely to have ongoing needs after recovery.
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Amended February 2009
