Last year Mavis N. reached out and spoke to the community about her mesothelioma diagnosis. Since then, she has faced many ups and downs. We would like to thank her for continuing to be a great voice among the mesothelioma community. Her last name is being withheld over privacy concerns.
You mentioned a hard start to the year. What has been going on?
The clinical trial I took part in wasn’t working and I thought I was on the placebo.
Can you describe your experience with the NGR015 clinical trial?
It was very time consuming. I was in the chemotherapy ward every week and had blood samples taken on other days. We also had to see the doctor to make sure we were coping well.
It was easy to have the drug put into our veins, although it doesn’t have a long life. The drug would expire by about 3:30 pm. I had to phone up as I traveled to make sure the drug was made up by the time I got there.
I felt okay at first and very fit, but by the time I had spent three months in the trial they found the mesothelioma was growing. I then had to go on Cisplatin and Alimta, and after three sessions I became allergic. On the fourth session in March I was taken ill. It has taken a long time to recover, but the scan showed my tumor is stable.
I’m afraid the trial didn’t work for me and two of my friends, and we couldn’t all have been given a placebo. My fears are that the Vinorelbine wasn’t powerful enough so the mesothelioma kept growing.
When you finished the trial did they tell you if you were on the placebo?
No, we don’t get to know for three years when the trial is finished.
How did you find the trial?
My oncologist recommended the trial and I jumped at it because I wasn’t suitable for the ADAM trial in St. Barts. I didn’t have arginine in my tumor, which was a requirement.
Would you recommend clinical trials to other mesothelioma patients?
It really is a personal preference, but I hate the placebo idea. We are desperate, so why should we waste time? We need a miracle.
How were the other mesothelioma survivors?
Tess had a drain put in as she had too much fluid again, but she is okay and doesn’t need chemo yet. Peter is in a very bad way as the mesothelioma has wrapped around his spine. He is in hospice now.
How has your husband Ray been with everything this year?
Ray has coped very well, although he now has been diagnosed with myeloma, a similar name, but it is a cancer of the bone marrow. He is being monitored and they believe it to be in early stages.
What does it mean to you that the community wants to celebrate you at the Independent Asbestos Training Providers (IATP) Charity Ball?
I was so very overwhelmed and I never had a clue that IATP was even thinking of me. But I love raising awareness and I love the mesowarriors, so I do accept it. We need to make the building industry aware that asbestos is still in buildings, and educate people doing DIY projects about it too.
Where do you see the community heading in 2013?
I hope it will grow. I also hope that IATP and CM Training can get through to the schools that have dangerous asbestos in their buildings, and that everyone who finds it at home carries out the British Lung Foundation’s Take 5 and Stay Alive.
Everyone at the Mesothelioma Centers sends our best wishes to Mavis and Ray. We truly thank them for everything they have done for the community. If you have questions about mesothelioma treatment options or finding the right doctor for you, please feel free to reach out to us on Facebook or Twitter.