How Ed used the Clinical Trial Navigation Service to explore his options with CLL

I was first diagnosed with monoclonal B-cell lymphocytosis (MBL) back in September 2013. I was fortunate to have a very good consultant at the time who carried out an MRI and various tests to get a full picture of my condition. I was then tested every four to six months all the way up to COVID-19.

As the pandemic started, my reviews took place over the phone which made me feel very uncomfortable. There were some changes at the hospital, and I was passed on to another consultant who wanted me to have a Lumbar puncture as my night sweats had increased, I was losing weight and felt constant fatigue, all classic warning signs.

In 2021 I had a face-to-face consultation which was not the best to be honest. I was informed that I had developed Chronic Lymphocytic Leukaemia (CLL) and would be passed over to a Cancer Nurse who would let me know what would happen next.

Confused and alone

As supportive as my treatment and support team were, I felt very confused and lonely. I joined the CLL Support group and heard about the Blood Cancer UK Clinical Trials Navigation Service (CTNS) through the Blood Cancer UK newsletter, both have been very helpful.

The value of the Clinical Trials Navigation Service

The team in the Clinical Trials Navigation Service were really supportive and called me a few times willing to answer any questions and concerns I have of my own wellbeing. I found this very reassuring as I was not getting the same support from the hospital.

I’ve not taken part in a clinical trial yet. I have put myself forward but to date heard nothing. The CTNS team identified Oxplored as a potential option. This is a trial specifically looking at watch and wait patients with some blood cancers, including CLL.

What has helped me

CLL is a very daunting diagnosis, but I have to say joining both groups has helped me feel I’m not on my own and can relate to many of the stories and questions that new patients have. I find exercise in the form of swimming has been a great help for my wellbeing and mindset.

One piece of advice

If I could give one piece of advice, I’d definitely recommend joining a support group and getting in touch with the Clinical Trials Navigation Service. They gradually help you come to terms with the condition and slowly become more positive. Plus getting updates on the continued improvements for the treatment of CLL just makes you feel that when you do need treatment it will be the best they have to offer.