Patient’s Story: Linda takes part in a clinical trial

I first visited my GP in March 2014 with the symptoms of a condition which was eventually diagnosed as Sideroblastic Anaemia. I was 59 years old, still working full time as a Chartered Accountant, and enjoying a life without any responsibility except for work and home. The Haematology Clinic at the PRU and the Supportive Therapy unit became increasingly familiar to me as I went through an array of tests whilst receiving regular blood transfusions. Eventually, it was determined that I had MDS RCMD.

Feeling down...

By the middle of 2016 it became clear that my need for transfusions was increasing and also that the Epoetin and Filgrastim were no longer having any effect on my HB.

By September 2016, I was needing fortnightly blood transfusions. It was increasingly difficult to fulfill my work commitments, even though these were much reduced. I wasn't doing much better on the home front either. This made me feel very down, as I could see no happy ending for my medical condition.

All changed when I became a participant in a clinical trial

This all changed after seeing Dr Gandhi on my next clinic appointment. He spoke to Dr Floro about my condition. Then Dr Floro contacted me to ask if I was interested in participating in a drug trial. Thus in November 2016, I became a participant in the stage 3 trial for Luspatercept for a period of 6 months. Although there was a 33% chance of being on the placebo, it was clear to me that this was a risk worth taking.

That has proved to be the case, even though it became increasingly obvious that I was receiving no benefit from the drug, and so was probably being injected with the placebo. I would take the same chance again, because throughout the trial, the medical care provided by Dr Floro and Maria Brillante has been first rate. My health has been monitored much more regularly, and in greater depth, than it would be if I were simply attending the Haematology Clinic.

Also, I have met other patients in exactly the same situation as my own, which is a huge positive for me. Perhaps most important is that I have come to see that I am making a real contribution to the future treatment of MDS simply by taking part in the trial. In a way, it has given me my life back, as I have had to step outside the comfort zone that I had created to help me deal with this condition that I didn't understand, and didn't feel I deserved.

Trials Recruiting Now

Read more information about current trials, eligibility criteria and what they are trying to achieve. Always discuss trial information with your own physician.