Sunday, 23 June 2013

The grim inevitable.

Even though the last lesion was tiny, and the lovely Dr Stewart said they had to go 19 slices in before they found any abnormal cells, they did indeed find them and they were cancerous. So I'm two for two now in my spotting of recurrences. Go me.

I had already decided to be proactive and ask for regular blood tests to check LDH level from hereon in, but when Dr S phoned me last week to tell me my LDH level was okay, she also dropped a bombshell: the Whiston MDT discussed me and decided to test my melanoma for the BRAF mutation, a common genetic mutation found in half of melanomas that causes the cells to divide uncontrollably. Dr S wasn't 100% sure why they want to test me but she speculated two reasons, neither of which make me want to celebrate and both related to a new 'wonder drug' called vemurafenib - vem for short. Vem is a BRAF inhibitor, a type of biological therapy which slows or stops melanoma growth for an average of six months. It looks like a miracle drug because it melts the tumours away very quickly indeed. It can take just days to get rid of a tumour and it's very exciting news in the world of melanoma treatment which, until very recently, has been pretty static.

Possible reason one: to check whether I'm BRAF positive or negative for future reference. If I'm positive, I would be suitable for vem. At the moment it's only given to stage 4 patients. Putting two and two together, then, they suspect I will become stage 4 and they want to be ready with the vem. That's really scary.

Possible reason two: to check whether I'm BRAF positive or negative for clinical trial purposes. At the moment, vem is only routinely given to people with stage 4 melanoma in an attempt to slow down metastatic spread and prolong a good quality of life. The stage 3 trial is aiming to see whether vem given to stage 3 patients can stop the spread of cancer. That's great on paper but there are two sticking points for me.

The first is that vem is only effective for an average of six months before the tumour becomes resistant and begins to find a way to grow again. Once that happens, no more vem for you because it's ineffective (although research is currently indicating that having a 'holiday' from the drug can kickstart it working again).

The second sticking point are the side effects, which commonly include joint and muscle pain, fatigue, hair thinning or loss, photosensitivity and skin problems such as blistering, rashes and painful thickening. Aside from all that, I don't feel that two recurrences is enough to see a pattern. If I have another in a few months then I would err towards constant and aggressive recurrences but two is not a large enough sample. I may take the vem and not have another tumour pop up for a year, but that may happen regardless.

I will go to the appointment and listen to what is said so I can make a decision with all the information in front of me (if indeed I am eligible for a trial in the first place) but this moment in time is not ideal. My job is very busy and competitive - there are a million people waiting for me to be unable to do it so they can jump into my shoes. I need to be on the ball and at the top of my game. Being a tired, balding, blistery person would not help me. I want to take part in a clinical trial to help science and to help myself but I don't know that this is it. 


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