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Asked The Nurse: CAR-T, curcumin and pain relief patches

Myeloma Information Specialist, Ellen Watters, talks about some of the most discussed topics on the Infoline in June.

Asked The Nurse, Myeloma UK news // 6th July 2018

Welcome to a new monthly blog called ‘Asked the Nurse’, brought to you by Myeloma Information Nurse Specialist, Ellen Watters.

The blog will review some of the topics which patients, family members and carers have asked us about throughout the month, as well as the recommended guidance and latest developments for these topics.

This month’s blog will look at:

Recently we have received some enquiries regarding CAR-T cell therapy, focussed on its availability as well as patient suitability for the procedure.

CAR-T cell therapy is a relatively new treatment for myeloma patients and is still in the clinical trial phase. Early results of CAR-T cell therapy in myeloma are promising. However, as it involves collecting and modifying T cells from each individual patient, the process is time-consuming, expensive and requires highly specialised skills. In the UK we are also still trying to prove its safety for patients. This is because the modified T cells may live in the body for a long time and we want to make sure that the changed cells remain safe. Three centres in the UK (London, Newcastle and Manchester) opened CAR-T trials to myeloma patients last year and we are still waiting to hear the results.  So although CAR-T cell therapy offers the prospect of a highly effective new treatment for myeloma in the coming years, it is currently not available on the NHS or in the UK, outside of these clinical trials. If you would like to read more about the clinical trial that is ongoing in the UK please look for the APRIL trial on our Myeloma Trial Finder here.

With regard to the use of curcumin (which is the active ingredient of turmeric) – this food supplement has been gaining a lot of interest recently but to due to a lack of clear and robust clinical evidence, we at Myeloma UK are not in a position to recommend curcumin for myeloma patients.

Unfortunately pain is a common complication of myeloma and myeloma bone disease and some patients have asked about pain relief patches. The patches are generally prescribed for moderate pain and release painkillers slowly over a period of time. The patches can cause gastrointestinal problems, muscle weakness, sleepiness and fatigue – unfortunately, all strong or moderate painkillers can potentially cause a range of side effects but this can vary from patient to patient.

If you feel that the pain relief patches are causing unanticipated side effects then speak to your doctor (haematologist) or clinical nurse specialist who may be able to suggest alternatives to your current pain relief patches. Sometimes the doctor will refer patients to the palliative care team for pain management – this team are experts in pain management, their focus is ensuring that patients’ symptoms are managed and quality of life improves.

I hope this blog has been helpful, but if you have any further questions please feel free to call the Myeloma Infoline on 0800 980 3332. My colleagues and I take calls on this line and would be happy to talk things through with you. Or alternatively, you can email directly as before to askthenurse@myeloma.org.uk

Best wishes

Ellen Watters
Myeloma Information Nurse Specialist