It has been a busy few months on the Shomelanoma Cancer Rollercoaster and almost a year has passed since I last updated my blog. We had a very busy year on the fundraising, more of that to come later and its now the end of April 2024 and I want to share a couple of significant milestones that have been reached. Firstly, on Mar 31, I reach my 7 year cancerversary of having stage 4 melanoma. With the recent media coverage of the Princess of Wales revealing that she had cancer, it took me back to that Friday afternoon on Mar 31, 2017 when I arrived at the Royal Marsden to be told that in my Oncologists words “we have a problem”. After being told that I had a melanoma tumour in my brain I don’t remember much about that consultation. Fortunately Dave was tuned in and everything moved quickly and I started my immunotherapy treatment a week later. Looking back on that time, the uncertainty, enormity of processing the bad news and also telling family and friends was the hardest part. When I watched the Princess of Wales sharing the news of her cancer diagnosis, it brought back memories of that difficult time. Her openness in sharing her diagnosis will help raise awareness of cancer, her message to other people living with cancer “you are not alone and there is hope” was very moving. I hope that she will now get the privacy to continue her treatment with the support of her family and without the continued intrusion and speculation from the world’s media.
This week I was back at Marsden HQ for my latest melanoma scans and both CT and MRI scans were all good. I have now been over 6 years on my current targeted treatment Debrafenib and Trametinib that I have been taking since my last melanoma recurrence in December 2017. The average length of time these drugs normally work for a stage 4 melanoma patient is 12 months however there are many patients who the drugs work significantly longer and I find myself fortunately in that cohort of patients. It also helped that when I had the recurrence there was only one small tumour in my brain and I had also had the benefit of the immunotherapy treatment prior to the targeted treatment. Clinical trials have also shown that having the treatment in that order can also be more effective.
It’s difficult to comprehend just how much melanoma treatment has advanced in the last 10 years. In February, my Oncologist Professor James Larkin spoke at a Gresham College event on Immunotherapy : Cure for Metastatic Cancers https://youtu.be/aYzaHAym9Sw?si=Ti2L71anCY8kqvNF and I encourage those of you who are interested to understand more about these amazing treatments to watch his presentation. Immunotherapy is not just helping those with melanoma but is also being used to treat lung cancer and kidney cancer. Prof Larkin also outlines new developments that are taking place in the immunotherapy field including cellular therapy which has just been approved for use in advanced melanoma in the US. This treatment involves taking a portion of the patient’s tumor tissue which is removed during a surgical procedure prior to treatment. The patients’ T cells are separated from the tumor tissue, further manufactured and then returned to the same patient as a single dose for infusion. This is the first FDA-approved tumor-derived T cell immunotherapy in the US. It is not yet approved for use in the Uk.
One of the other exciting developments is the use of immunotherapy with a cancer vaccine to treat melanoma. This has shown promising results in clinical trials and a stage 3 global trial is currently underway. `Immunotherapy does cause significant side effects for many patients and as Prof Larkin highlights in his talk there is still much more work to be done to better treat patients who experience what can be life-changing side effects. Currently patients who experience these side effects are almost universally treated with steroids which itself can bring problems and there is much more work to be done in developing different treatments for these side effects and also predicting which patients will experience them.
As 50% of advanced melanoma patients do not respond to immunotherapy and targeted treatment only works on average for 12 months there is still unmet need for new treatments which Prof Larkin also discussed in his talk. We also be learned more about this at the recent Melanoma Patient Conference that David and I attended on Feb 29/Mar 1 in Birmingham. The conference was excellent, this was the 4th conference that David and I have attended and the conference was as informative and insightful as ever. As a cancer patient there are many things out of your control but learning as much as you can about the latest treatments has always been something that I have found extremely helpful and I always advocate this to fellow patients. Two of the highlights of this year’s conference for me were the patient stories, there is always so much that is relateable to your own situation. There was also a very interesting session from Professor Julian Marchesi on the learnings of the microbiome and cancer and there are clinical trials taking place to understand more about this and some of this involves faecal transplants, the power of poo. I will leave that there for now and come back once there is more conclusive data. It was lovely to see so many familiar faces at the conference and also meet new patients. Imogen and Melanoma Focus do a wonderful job organising the event and I always encourage melanoma patients to attend.
When I returned home from the conference a few days later I started to feel quite ill. I had a fever, lack of energy and felt completely wiped out. It felt like the side effects I had from Dab/Tram early on in my drug cycle. However when I contacted my team, they said they thought it was more likely I had picked up a virus and to contact them if the situation got worse. A few days later I was still feeling unwell and I had come out in a full body skin rash. I called the hospital and they told me to take a COVID tests to rule that out (it was negative) and booked me in for a full MOT. The next morning I headed off to the hospital to get checked out. The dermatologist gave me a full skin check and then I had a raft of tests to see what was going on. As I was checked into the centre for urgent care and had a wrist band put on, I wondered if I was going to be staying for the night. After a couple of hours my blood test results came back and the doctor came to see me. He said that my infection and liver markers were raised which was in line with what they would expect from a bad virus. In addition, my white blood cell count was slightly low. I was allowed to go home but I had to return later in the week to have the blood tests repeated. I was still feeling pretty dreadful and didn’t move from the sofa much that week. On returning to the hospital the blood tests were repeated and I received a call to say that the infection and liver markers were lower and moving in the correct direction and if I was feeling better I could go back onto my melanoma drugs. It did take another few days before I started to feel better and it was a total of 2 weeks feeling unwell. It has been a long time since I have felt this unwell, it did make me appreciate the fact that in recent times I have been very fortunate not to experience severe side effects from my drugs but also how frightening it can be to suddenly be feeling so unwell and for it to be lasting a significant time. I am on the mend now as my husband said to me the other day she’s back and I am getting back to building my energy and getting back to my fitness. A big thank you to the Royal Marsden team as always for taking such great care of me, I am forever grateful to the amazing team there.
The last 12 months have been incredible for the Team Shomelanoma fundraising. After the Isle of Wight 100km trek which raised over £14k, we also had my Uncle Gerard’s Senior Captaincy at Crondon Park Golf Club. They raised £2.7k with a golf day, quiz, raffle and dinner. I was delighted to attend the golf day and bbq dinner with Dave last summer and speak to the members sharing my melanoma story and also about the work of the Royal Marsden Cancer Charity. It was a really lovely day and we are hugely grateful to Uncle Gerard and Aunt Lavinia plus all of the golf club for raising such a wonderful amount towards the charity.
With the recent news that the BT Tower has now been sold to be converted into a hotel, I have been reflecting this week on how fortunate we were to have such an incredible venue for the Team Shomelanoma Celebratory Fundraiser last summer. We wanted to celebrate Team Shomelanoma reaching the £100k milestone with all of our family and friends who have been such an amazing support over the past 7 years. Our wonderful friends Johnny and Liz mentioned during the Isle of Wight 100km challenge that it may be possible to have a celebratory fundraiser at the BT Tower as Johnny works for BT. In early June, Johnny confirmed that we had the go ahead with BT and we moved into gear to organise the Shomelanoma fundraiser. The next few weeks passed quickly and with the help of the BT team led by Sarah Morrison, my good friend Pippa Laxton the Royal Marsden Charity Team Tammy Savill and Mari-Louise White plus Liz, Jo and the team at Superstars we pulled together the whole event which was on Aug 10. Given how iconic the BT Tower is, the amazing views of London and the fact it is not open to the public, we were not surprised that the tickets for the party sold out quickly. We had the most incredible evening on Aug 10, 2023 one that will stay in the memory bank for years to come. It was a huge success raising another £20k for melanoma research at the Royal Marsden, we were able to thank all of our family and friends for all of their incredible support plus highlight some of the amazing challenges that have been done over the last few years. There were a few tears, lots of drinks, the dance floor was rotating and the silent auction was a great hit. The evening would not have been possible without the kind and very generous support of our good friends Jen and Paul Clark so a very special thank you to them. You may have already seen the videos and photos from the evening kindly captured by our photographer Jak Lloyd and I have included a small selection here. It was truly an incredible evening and a big highlight of 2023.
In the Autumn we had a team running the Royal Parks Half Marathon, Chris, Fraser, Steve and Paul and they all ran fabulous times. Dave is threatening to return this year if the hiking challenge is not too close. Last weekend the lovely Becky Pearce ran this year’s London Marathon and raised further funds for the Royal Marsden. She was smiling the whole way round and we loved going to support her along the route and it was great to spend time with her at the Royal Marsden Cancer Charity reception after the race. More funds were raised and the current total is now at £127,800 which is incredible and the team are all hugely grateful for all of your support so a huge thank you to everyone who has taken part in the challenges and supported melanoma research at this amazing charity, there is more to come in 2024 and we are just finalising the Team Shomelanoma hike challenge for later this year.
Team Shomelanoma has been recognised for their outstanding support (raising over £100k) for the Royal Marsden Cancer Charity and has been invited to join The William Marsden Circle. To recognise the incredible support a Team Shomelanoma plaque ( see below) has been added to the roll of honour boards in Chelsea and Sutton plus Team Shomelanoma will appear in the annual Impact Reports. In addition, we will receive regular updates from the charity as well as invitations to events. A huge thank you once again to all of our wonderful family and friends for all of your support. You are making a significant difference in improving the lives of cancer patients at The Royal Marsden and beyond.
In the early summer last year, I was honoured to be invited to speak at the opening of The Oak Cancer Centre at The Royal Marsden, Sutton. The new facility has incredible state of the art facillities, expanding the capacity for patients and co-locates scientists, doctors and researchers for the benefit of all patients. I spoke to share my patient story and the Team Shomelanoma fundraising efforts. It was a very exciting day, my Oncologist Prof Larkin was there with me plus broadcaster and journalist Nick Owen whose wife has also been treated at The Royal Marsden and Prof Nicholas Van As who is the Medical Director. Here are a few photos of a very special day.
As it’s taken a long time to finish this blog, we are now about to start May which is Melanoma Awareness Month. In the UK we see 17,500 new cases of melanoma every year. It is 86% preventable by protecting your skin from the sun and doing regular skin checks. The Melanoma Focus website has a very good skin check guidelines ( https://melanomafocus.org/about-melanoma/skin-check-leaflet) to help you identify any changes and the motto is always if in doubt get it checked out either by your GP or a dermatologist. I will be sharing more useful content over the month of May for Melanoma Awareness Month.
Thank you as always for all of your amazing support it means the world and I’ll be back with more Shomelanoma adventures soon.