It has been three years since my brother passed away. Exactly on this day. They say things get easier in time but I still cant find my peace with this. It is unacceptable. He died just 5 days before his 38th birthday. The cause of his death was melanoma. Three years ago this type of cancer was announced to be the worst. Rapidly lead to significantly bad outcome. A little mole can kill us.
My brother always had this mole on the top of his head. I always bumped into it with the comb when I dyed his long hair to black. Oh one mistake! You can tell everybody knows that hair dye can cause cancer. So it was there. And one day in 2007 this mole started growing and changing. My mum noticed and took my brother to the oncology clinic where they wanted to cut it out with safety zone to prevent re-occurrence. Simple and easy procedure, no pain. You could say. But since it was on the top of his head and the intervention would had resulted in a bald area in the hair my brother went somewhere else looking for another solution. And since I was a supportive sister I helped him looking for alternative solutions. So he went to this other clinic where they just cut the mole and noone could see any sign of the intervention. The tissue went for further examination and everybody got relieved when the result came back as negative. He did not have melanoma. Phew..We thought. Vanity won! My brother could keep his long black hair. No damage was caused in his self-esteem and he rid of the sick part. Yay.
But two years later in 2009 that little stubborn black dot appeared again at the same place and started growing again. So this time my brother went to the oncology clinic straight away and got the mole cut out with safety zone. Tissue went for analysis again. But this time it came back as bad news. He had melanoma. Cancer. And they said it got already to the blood and lymph circulation. They prescribed him with interferon which he needed to inject every couple of weeks and went for follow ups every three months. The oncology clinic also requested the previous tissue sample from the other clinic for further evaluation and the shock just reached us: the first evaluation was false and it was not negative but positive. My brother had melanoma in 2007 and got mistreated. So whom to blame now? My brother for his vanity? Myself to support him with finding another clinic? My mum still blames herself not forcing even more the first intervention at the oncology clinic. The doctors who misjudged the tissue? God who let this happen? All or none. It would not help us.
Life went on and my brother went for his regular follow ups (every three months) , shot the injection and he was doing well. No metastasis appeared.
Years went by and according to the melanoma protocol the follow-ups got less frequent. At the end of 2011 he went back for his usual scans, blood tests, X-rays but then they discovered a spot on his lung. It was the first metastasis. So they started more serious treatment than interferon. He still was doing well. No symptoms of the metastasis he felt good and carried his life as usual. Then one day we got great news. Due to his stable condition (his lung metastatis was not decreasing in size but did not grow at all neither spread) he got enrolled to a clinical trial with the best available treatment. Since I worked in drug development (namely in pharmacovigilance which is monitoring and evaluating the adverse drug effects; in the big picture this science is responsible to tell us if a medication is safe to take: would it kill us or treat us) I asked one of my oncologist colleague what he thought about the medication my brother was going to receive. He said that this medication was the best available treatment in those days. Yay! Such a good luck we thought. We were really happy and optimistic. Of course we thought that this drug would eliminate his cancer forever.
So he started with this magical medication and his overall condition started worsening. Yes worsening. After the second shot his metastasis spread all over his body. They diagnosed the new metastatic cancers in various places in his lung and in his spine and in his liver. That was in September 2012. On 27th of November 2012 he passed away. There was no help. They would not give him other treatment due to his bad condition. They just offered morphine to decrease his pain. I lived already in London and I saw him in mid September then at the end of October when he more or less looked ok then I flew home 3 weeks later in November and I could not recognized him. The change in three weeks was so significant. The cancer clearly took power on him. He could not breath normally or even stood up alone. I had to fly back to London then two days later I got a text from my mum. "Your brother has only a couple of hours left". Took the first plane, flew back and arrived just in time. He passed away an hour later I arrived to the hospital. My mum and me held his hands as he was passing through to the unknown. We confirmed each other about our eternal love but he was not aware what was going to happen to him. Noone told him. I had to tell him. I saw he gave up the fight at once. When I told him he was going to die they gave him a morphine shot which he refused earlier as he wanted to stay conscious he wanted to talk to us. But when I informed him why doctors did not do any further treatment he just gave up fighting. 15 minutes later he was on his way to the other side.
My mum and me often put the blame on that clinical trial as his symptoms were aggravated so quickly when he got those doses. He got ipilimumab. This medication has a marketing authorization nowadays. This medication is given to patients with melanoma around the world. Its not chemo therapy. Its a monoclonal antibody. It does something with the immune system. When I asked another medical monitor about this drug he said sadly: "we do not have enough knowledge and have no idea what these immune drugs are going to do to us. We just experiment with them hoping that something good would happen."
I cant rid of these thoughts. Would he have lived a little bit longer without that medication? Would he survived till they found a better solution? I just read that there is a new fantastic drug for treating last stage melanoma. Interestingly its a virus which apparently kills the cancer cells. No side effects maximum a little flu-like syndrome. Ipilimumab has horrible side effects as well.
Working in Pharmcovigilance I know what happened with my brother. He became an Individual Case Safety Report. With a single patient ID. Sorry not patient ID but subject ID this is how they call the patients in clinical trials. A data as part of the fatal outcomes list during clinical trial. I often wonder what could have been the causal relationship judged by trial investigator? Did they mark as related? Or not related as they often do? Practising the rule written in the EU directive that fatal outcome due to disease progression or aggravation of the underlaying disease is normally NOT related to the study medication. We - my mum and me - are 100% sure that this fast change in his condition was related to the study drug. But who cares now? Does it matter to the sponsor who initiates the clinical trial? People with last stage melanoma would die either way does it matter how long do they suffer? Or their quality of life during treatment? Their interest is having less causally related cases so they can get that approval from regulatory authority and they get back their billions what they invested during the years of drug development. I saw cases when the investigator deemed an adverse event as causally related to study drug then the sponsor pushed back and forced the investigator to say "not related". Sponsors dont like related cases. More related cases in a study means less chance for marketing. Loosing money. No no that's unacceptable from sponsor point of view.
So what was administered to my brother: the best available treatment or experimental poison?
And what about loosing my brother? Can I ever accept that we made wrong decision and went to the wrong place at the first occurrence of the cancer? Can I ever accept that somebody made a mistake saying his tissue sample was negative? Can I accept that my brother did not commit to all possible things which could have helped him? My aunt suggested to do a radical therapy called Gerson therapy but his oncologist was against it and he did not dare to choose this treatment since it is really tough one. Who would disagree with their treating physician? Can I accept that I did not have the right knowledge to help him with his decisions? Even if I supported the idea of alternative therapies he did not really want to commit to radical life changing treatment such as Gerson therapy as long as he was doing ok. He was doing a little bit of this a little bit of that...
Can I accept that pharma companies uses us as experimental bunnies in the name of developing better medication to treat more people? Or is it for money only? What is the truth? Can anything bring him back? Will ever these experiments with sick people who are hoping to get the best cure and their pointless deaths lead to an ultimate medication to treat cancer one day? Or they just remain data in safety databases and a line on the 6 months line listing of the fatal events?
I don't really want to put the blame on the pharmaceutical companies. Looking back this whole situation is very complex and I am afraid at the end of the day it was my brother who did not take it too seriously from the beginning. But not just him. He really listened to me. Since I have health care professional background plus working in drug development he really listened to my opinion. But I was not aware of it. I did not take it seriously either. I did not think that my brother could die due to a stupid little mole. You know these things are happening always with somebody else. Not with you not with me not with my beloved.
No my dear. These things can happen to any of us. Cancer cells are within us. The question is whether they activate themselves or not. And another question is: do you take it seriously? Do you make all your efforts to fight against it? Do you realize that you can die? Are you aware that this body is fragile? Do you make every efforts to protect your life and your beloved ones'?
Are you aware that you as you are in this body is a unique miracle? Its an opportunity which will never ever come back. If you miss to appreciate your life you can loose it in a heartbeat and you will never ever get back the chance to see or talk or hug your beloved one. Not in this life not in any other lives. It will never be the same again! You will never ever get back the same body the same face the same relation to others.
So take good care of yourself my dear friends. Your life is precious.