Charlene’s Cancer Journey: A New Project

The scan results are back... and it’s positive news. My tumours have remained stable at the same size once again. This is a huge relief as I’ve been having a lot of abdominal pains lately and had convinced myself that the cancer had started to grow again. My treatment continues fortnightly. I’m still waiting for my port to be fitted (typical NHS waiting lists!). I’ve reduced my Fentanyl dose down to 25micrograms, but can’t go any further than this or the pain is too much. My issue now is that I’ve been on this immunotherapy drug for almost a year now and the drug company only said they would fund it for two years or until the cancer progressed, whichever is sooner. My consultant has suggested I begin looking for funding support sooner rather than later, as there is no sign of this drug being approved by NICE for use in treatment of bowel cancer on the NHS. It’s really frustrating because the drug is licensed for some other cancers such as lung cancer and renal cancer, it’s just that it hasn’t had as good a success rate with bowel cancer so they don’t seem to want to push for licensing. I intend on spending the next few weeks writing to charities and rich people to see if they can help me out as my treatment will cost over £5000 a month once the two years are up. I am also going to write to the drug company to plead with them for an extension to the free treatment and to push for licensing Nivolumab for treatment of bowel cancer on the NHS. I’ve set up a GoFundMe page to start some crowdfunding aiming to raise enough for another two years of treatment. The link is: http://gofundme.com/charlenes-immunotherapy-lifeline

In other news, we had a lovely Christmas at my mum’s and then a second Christmas with my children and granddaughter. We’ve finally finished decorating the lounge-diner and it looks great.