Hi my name is Stephen. I was born the third child of five and grew up in Pascoe Vale South, Melbourne . Dad was a tradesman, a glazier (no he didn’t do the glazing on cakes as one Employment Guidance person once asked)! I have a caring family and I love my 3 brothers and 1 sister. I have, since the day I was born, been a person and as my life developed correspondingly became a statistical number probably in far more pages than I know. Somewhere my allotted number lies in various pages of some meaningful and some meaningless statistics. In 2015 I became one of about 600 people in Australia to be diagnosed with pleural mesothelioma, a statistic. Sometime in the future I will most likely die as a result of having mesothelioma and my death will be noted as yet another single numbered statistic in the pages of statistics, just another number. More than a statistic I am a person with parents, brothers, a sister, a wife, children, a grandchild with all the interactions that occur with family and friends, yes there are nicknames but these are given in a form of endearment. I left school at the end of Form 5 (year 11) and commenced and completed an Apprenticeship in Electroplating, winning a few awards along the way. With further studies I was able gain a position in a chemistry laboratory and with advancements of position this has been my working life. In my mid-teens I formed a relationship with a girl that lived virtually around the corner. We married, have 3 children and currently 1 grandchild. A new year commenced, 2015, I was approaching the age of 60, my wife and I were pondering retirement. I had always maintained excellent health, though in January felt just not quite right. A visit to the doctor and a range tests revealed I had a right pleural effusion, which is fluid in the right pleural cavity; so off to hospital to have a thoracentesis, about 1300 ml of slightly blood stained fluid was drained from the pleural cavity and there was more tests and questions. The pathology testing nothing suspicious was found and pneumonia was diagnosed. A CT Scan check a few months later showed no further fluid build-up and an assessment of ‘completely resolved’ was given. In August I hurt my back, in between doctor visits I had some symptoms consistent with the pleural effusion I had earlier in the year. Mentioning this I was sent for an X-ray, it revealed that there was some fluid, approximately a 15% impact on the right pleural cavity. Off to hospital, about a week after the first X-ray a second showed about a 60% impact to the pleural cavity. My 60th birthday was spent in hospital having thoracentesis, only about 800 ml was drained, I was expecting more, it looked like blood. Being somewhat alarmed on my behalf my wife made contact with some of the doctors I had seen back in February, she pushed and pushed for me to be seen fortunately she had success and ultimately I was able to see, outside his normal consultation times, a thoracic surgeon. In the consultation he was able to tell me the drained fluid’s pathology had been diagnosed as adenosarcoma though this was not conclusive and further evaluation of the sample was taking place. He booked me in for surgery the following day and performed another thoracentesis and pleurodesis. Over 2100 ml of fluid was drained, biopsy specimens were taken and the lung was adhered to the pleural lining. One week later the surgeon told me both the initial blood’s further pathology and the biopsy’s pathology revealed pleural mesothelioma. I had some very basic awareness of this form of cancer and there was some discussion about exposure to asbestos. He set me up to see an Oncologist closer to home for ease of treatments that I was to have. I left his consultation-rooms not knowing that the cancer I have is terminal, it may have been mentioned but I do not recall it. I had to wait 5 weeks before being able commence chemotherapy. My health was on the decline and I was extremely unwell. The Oncologist discussed, with me, the chemotherapy and using the drug Cisplatin: she pondered if I was given maximum doses if I could tolerate its side effects and that my hearing could be compromised, I said I’d rather be alive with poor hearing than dead with perfect hearing. So I started on Cisplatin/Alimta mix chemotherapy, I called these ‘Super Chemos’. I handled the chemotherapy well, I have since heard of others that couldn’t handle this treatment. My first hurdle was for the volume of mesothelioma tumours to be the same or less after 2 rounds of chemotherapy or there would be an alternate treatment, this was never discussed, I just scraped through as there was a very, very slight reduction as assessed by the Oncologist not the Radiographer. Two further chemotherapy treatments and there was significant reduction of tumours. My reward was to have, my terminology ‘Supplementary Chemos’. After treatments 1 and 2 of Supplementary Chemos there was large reduction of tumour. After treatments 3 and 4 the tumour rating was ‘stable’ though there had been a slight increase of tumour in two sites. Information I was told retrospectively, it seems the really bad stuff isn’t told to you up front: · Your cancer, initially was quite aggressive · Normally we see a large reduction of tumour after chemo treatments 1 and 2 and a moderate reduction after chemo treatments 3 and 4. You have done the reverse. · On asking why there is about a 50% mortality rate within 2 years? The people cannot handle the chemotherapy or the cancer is so aggressive it cannot be controlled. · Normally we do not see a large reduction of tumour after ‘Supplementary Chemo’ treatments 1 and 2. · While in hospital for another issue the ward nurses at change over described my cancer as advanced mesothelioma. Since my diagnosis through Facebook groups I have heard of people dying because of mesothelioma though they were diagnosed after me. Information provided to me at a pre-chemotherapy information session graphed from diagnosis and years lived (survived might be a better label) so it would appear if you get past 3 years you have a good chance of living for another 7 years. I have since found out living involves round after round of chemotherapy and as you become sensitised to one of the chemotherapy drugs another drug is used to keep the cancer suppressed and so cycle goes on. I hear of possible treatments for mesothelioma with preliminary testing showing more than promising results for some, particularly Keytruda. This drug is already on the PBS for treatment of melanoma however with the complexity of the approval system it is not available, on the PBS, for mesothelioma. It is disheartening to hear of people with a terminal illness that have a chance to live; and actually with an improvement to quality of life, yet are faced with the option of: your money or your life. It could be that if these promising treatments/drugs were used in a controlled trial, its collaboration could provide conclusive evaluation. Of course there is desperation the current chemotherapy treatments at best can maintain mesothelioma cancer tumours at a stable condition. No remission or completely gone at best it is controlled. Me along with many others that have a rare or less common cancer want to hear there is a cure, the treatment is covered by the PBS. My Oncologist considered that I would be a good candidate for a mesothelioma trial should any be available as I do not have any other health issues. I have been nominated and accepted into the Phase II study of intravenous anetumab ravtansine (BAY 94-9343) Protocol Number 15743. This is a chemotherapy application. The theory is: mesothelioma cancers express mesothelin, the antibody part of the anetumab ravtansine is expected to deliver the ravtansine (chemotherapy) directly to the tumour for the purpose of killing the cancer cells that express mesothelin with lower risk of side effects in other body areas. In this study there is a 2 in 3 chance of receiving the trial drug. At the moment I am recuperating from a back surgery and all being well I will, after more pretesting, commence the trial late June 2016. You may have noticed that I have not mentioned how I was exposed to asbestos? The answer being does it matter? No! I do not concern myself, I know it was exposure many years ago and I cannot go back and change what happened. I do not consider that I am battling or fighting cancer, I live with cancer. I have a cancer that was not contributed to by a life style choice; it was caused by authorities allowing a carcinogen to be widely distributed into our urban environment. I follow the advice given to me by my Oncologist including treatments and try to maintain a healthy life style. Though my life now is a cycle of medical appointments, pre-testing, treatments, avoiding crowds while my immune system is compromised and recovery. My plans of retirement have changed dramatically. I wait for regular results of CT scans that will determine what my treatments will be for the next 2 months. Having mesothelioma is a full time job. I have to do my best to keep it suppressed. Mesothelioma is a terminal cancer, no getting away from that, though I hope the day is near when it is not. Today it remains just how long I can live with it. Cheers, Stephen