I was diagnosed with bone marrow cancer (CML). The gold standard treatment for this cancer is a TKI, you don’t have to know what it stands for, but it kills the mutations in your blood.
It was not working very well for me and I was offered a chance to go on a ‘drug trial’. It was a very positive experience for me. The trial was offered to patients who were not responding sufficiently to the standard dose of Glivec (The first up and working TKI). Patients would be given either a double dose of the Glivec or a new second generation TKI called Sprycel.
On starting on the trial I felt very well supported and looked after. I was assigned a trial nurse who gave me plenty of time and communication. My particular drugs trial collapsed, as the dugs company could not recruit enough patients.
I am still on the new drug and it is working very well for me, even though NICE, the NHS drugs governing regime, has not given it the go ahead for patients. My positive experience has spurred me to explain some of the positives and negatives of joining a drugs trial.
I was diagnosed with breast cancer and had a double mastectomy to remove and reconstruct my breasts. Mr Ross, a plastic surgeon at Guy’s, led my surgery. He’s the reason I wanted to give back to Guy’s.
After my illness, I lost my way for a bit – I kept thinking ‘why me?’. I wanted to use my own academic background to benefit others, and working with researchers helped me to find my confidence again. I know that I may not directly benefit from the research I am helping with in my own lifetime, but I am happy that my contribution will help someone else one day.
I am part of the Patient and Public Involvement Advisory Group (PPIAG), so I talk to researchers about how to reach patients who might be wary of research, and I talk to patients about why research is such a positive thing. I hope I put a human face on what these amazing men and women do.
I get a lot out of knowing that I have helped someone to feel confident enough to take part in research, but for me, the simple fact that I turned my diagnosis into something positive is something I’ll always treasure.
My daughter Claire was diagnosed with FIGO stage 4 cervical cancer in December 2008. The treatment pathway for my daughter was radiotherapy. This included external radiotherapy followed by the insertion of radioactive rods.
My daughter unfortunately developed radiation enteritis which I understand is common after radiotherapy. This is an ongoing condition which in time leads to severe bowel problems. Claire was referred to a consultant to take part in a clinical trial. This clinical trial was to see if following radiation treatment some patients have an overgrowth of the normal bacteria in their gut which can cause problems.
Claire was therefore prescribed antibiotics. Unfortunately, they did not help and it seems that my daughter is not one of those patients who have this problem.
When Claire was asked to go on the trial we both felt very positive as this treatment seemed to be a solution to her ongoing bowel problems. The consultant and trial nurse were very supportive and explained each step of the progress in great detail.
Although this trial did not help Claire, she has been offered other options for treatment and the offer of taking part in other trials.
Patients can always find out some of the positive and negatives before joining a trial. The support you receive before and after the trial is very comforting.