Dr Robert Danby MBChB (Hons), DPhil, MRCP, FRCPath is a Consultant Haematologist at Oxford University Hospitals NHS Foundation Trust and Anthony Nolan.
What is CMV and why is this important to patients who have had a stem cell transplant?
Cytomegalovirus (CMV) is a very common virus, often caught during childhood, and is usually harmless. For healthy people, the immune system controls CMV and it lives dormant in the body without causing symptoms (much like chicken pox),
After a donor stem cell transplant, a patient’s immune system can be weak and unable to keep CMV at bay as it usually does. The virus is then able to replicate, known as reactivation. CMV reactivation can occur post-transplant and, although it is usually treatable, it can have a negative impact on recovery.
How is CMV reactivation treated?
Modern sensitive techniques can detect CMV reactivation early before it causes symptoms. In straightforward cases, CMV treatment requires additional medication and can be managed as an outpatient. For others, where it is more difficult to control, treatment requires additional stays in hospital. This can be really disheartening for patients.
Existing treatments for CMV can have side effects including nausea, loss of appetite, weight loss, fatigue, low blood counts (neutropenia) leading to infection, and changes to kidney function
Patients who experience CMV reactivation tend to have a reduced quality of life, impacting recovery both physically and psychologically. This is why it’s so important that new treatment options are explored.
'The three separate occasions of CMV reactivation had a detrimental impact on my recovery from the transplant. Apart from hospitalisation and requiring a new central line fitted to administer intravenous medication. It was like taking a massive step back wards in my recovery. I had very little quality of life, no social life, unable to work and lost the bit of independence I had built up after leaving hospital after the transplant. I was very depressed and anxious.' Stem cell transplant recipient
Is treatment for CMV reactivation an area of active research?
Recent clinical trials have shown that a new durg, letermovir, can lower the chances of CMV reactivation for those patients who already have CMV before transplant. As well as preventing CMV reactivation, letermovir may have fewer serious side-effects than current treatments for CMV. This medicine could potentially change the recovery of hundreds of stem cell transplant patients a year in the United Kingdom.
What psychological support is available to patients struggling with the effects of CMV reactivation?
Some transplant centres have their own psychotherapist or psychologist. I’d advise patients to speak to their clinical nurse specialists about being referred.
What is Anthony Nolan doing to help patients experiencing CMV reactivation?
Right now, Anthony Nolan is talking to The National Institute for Health and Care Excellence (NICE), which is deciding whether or not a new treatment for CMV called letermovir (also known as Provymis) should be available on the NHS. To make sure that we are accurately representing the experiences of patients and their families, we have launched a survey. To find out what is is really like for them.
If you are interested in sharing your experiences to support this work we are looking for responses from patients or people who cared for patients who experienced CMV reactivation after their stem cell transplant.
The survey will only take about ten minutes to complete, but the impact it could have for future stem cell transplant patients is absolutely huge. Please complete the survey here.
If you or someone you know has experienced CMV reactivation and would find speaking to our Lead Nurse helpful, please don't hesitate to contact Hayley Leonard in Patient Services on 0303 303 0303.