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.
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.
I can devote my time to things that bring me pleasure
As a footnote, I have stopped working, so that I can devote my time to things that bring me pleasure rather than financial reward. My colleagues have been wonderfully supportive, and have followed my progress with great interest. I am also fortunate to have had the support of my son, Sebastian, who has been there for me throughout my illness, but especially during the trial.
So, in conclusion, I am very pleased that I had the opportunity to take part, and even though I still need a blood transfusion every two weeks, I remain optimistic for the future. Thank you everyone for looking after me.
Please do send us your story – whether you are a patient, family member or friend:
Email it to firstname.lastname@example.org, or call to our main office Tel: 020 7733 7558.
You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well. Thank you in advance!
You are also invited to join our forum, a lively community of MDS patients sharing their own experiences and questions.