My Shomelanoma Story

 

I am a fun loving adventurer who loves life, travel, fashion, marketing, adventure and taking on a challenge. My life changed forever when I was diagnosed with melanoma after a dodgy mole was removed from my back in June 2016. It was displaying all of the signs of melanoma as it had grown; become darker and just before it was removed had started to bleed. It was thick – 4.5mm, ulcerated and after a WLE (wide local excision) had spread to my lymph nodes by Jan 2017. I had a full axillary dissection to remove about 20 of my lymph nodes in February but by the end of March 2017 a scan showed the melanoma turned up with a small tumour in my brain. I started immunotherapy (IPI/Nivo) before experiencing grade 4 adverse side effects causing autoimmune hepatitis and it took 3 weeks at Marsden HQ being treated with steroids and mycophenolate followed by 6 months being weaned off the medication to get it under control. Fortunately, I responded to the immunotherapy but after 6 months in Dec 2017 I had a recurrence in the brain when a new small tumour was detected. Since then I have been on my current targeted drug treatment of Debrafenib and Trametinib, which has reduced the size of my tumour and kept the rest of my body clear.

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As little as 5 years ago, a stage 4 diagnosis provided an average life expectancy of between 6 and 9 months. Fortunately there has been significant progress in the treatment of advanced melanoma in the last 5 years with the introduction of immunotherapy and targeted treatment and for a number of patients the outlook is much brighter. However, much still needs to be done as many patients don’t respond to immunotherapy and resistance is often developed to targeted therapy.

I am very fortunate to be treated by the fantastic melanoma team led by world renowned Oncologist Professor James Larkin at the Royal Marsden Hospital in London. The care I receive at the hospital is outstanding and the research undertaken to continue developing new treatments is at the forefront of medical science and developments globally. Since my 3-week stay in hospital in June 2017, we have been fundraising for melanoma research at the Royal Marsden. This is our way of giving back and saying thank you by providing funds for ongoing research. The funds are being directed into specific melanoma research projects and full details and regular updates are available on my blog.

So far the shomelanoma fundraising has raised over £50k and we are very grateful to all of our friends and family that have undertaken and supported all of the fundraising challenges and activities. We have also had fun doing many of the challenges and created lots of happy memories, which has made the whole experience very special whilst it has also keeping me fit and mentally focused. There is more to come so watch this space.

I write my blog to raise awareness of melanoma, keep friends and family up to date on the latest adventures and help others who may find themselves with the misfortune of a similar diagnosis. Whilst life has changed forever I am making the most of every day and enjoying it to the max with all of those that I love and continuing to take on as many adventures as possible.

 

Shionawedding