Cancer · Fundraising · Living with Cancer · Melanoma

Scanxiety in Service Stations and the next Shomelanoma Challenge

On a high in the Peaks

Since escaping lockdown and the lifting of the shielding restrictions, I’ve loved the freedom of catching up with friends and family over the summer. It has passed all too quickly and after a lovely weekend in the Peak District last month to celebrate my mother in laws 75th birthday it was back to awaiting for the latest scan results. I had a new experience going to the Marsden for my latest scans as they took place in the car park.  I understand from the radiographer that the MRI scanner in the car park will be moving into the main hospital building later in the year but actually having it there was good given all the current COVID restrictions. The experience was efficient as ever but part way through the scan I began to need the loo and lying still became an issue for me.  The radiographer stopped the scan and told me I needed to stop wriggling as they had to repeat a section of the scan. I had to hang on a bit longer and then bolted straight to the nearest loo, memo to self always go to the loo in future before scans.

After a gorgeous weekend in the Peaks where I didn’t have much time to think about scan results, it was back in the car on Monday morning for the return to London.  The consultations with my doctor are currently taking place by phone so David suggested we stop for coffee around the time of my appointment. As my appointment time passed and I was anxiously looking at my watch, David said  “you didn’t expect to be called on time did you?”  And yes the clinic was running late so we stopped at a service station and I was feeling anxious.  It wasn’t helped by the fact there was nowhere to have a private call and there were lots of screaming kids in a playground and I kept needing the loo.  However, after the stress came the relief when the phone rang and I was told that my latest scans were all good. My wonder targeted drugs Debrafenib and Trametinib that I have been taking for 2 yrs 9 months are still working and I am feeling well which is amazing.  I left the service station feeling much happier than when I arrived but receiving scan results in service stations definitely won’t become the new normal.

Team Shomelanoma training around Henley

With the sense of relief that my scans are good comes the worry of the resurgence of COVID cases in the UK.  The thought of returning to shielding is just not something I can bear to think about and of more concern is the continued priority focus on COVID at the expense of other serious health conditions including cancer which are becoming part of the collateral damage of this pandemic.  Charities such as CRUK, Macmillan and Maggies are all making huge cuts to their funding which will impact cancer research, support services and end of life care. The reason I am still here alive and kicking is very much due to cancer research. Only 10 years ago the average prognosis for a stage 4 melanoma patient was just 9 months.  If it wasn’t for cancer research and clinical trials I would not still be here today.

The Royal Marsden cancer charity has also been severely affected by the pandemic and fundraising has dropped by 70%. As you are aware, we have been fundraising to support melanoma research at the Royal Marsden and now more than ever with so many fundraising events cancelled due to COVID it is a critical time to support the charity.  In just under 2 weeks Team Shomelanoma will be taking to the epic coastline of the Giants Causeway in Northern Ireland. In this tough one day challenge we will be trekking a marathon distance along  the  undulating terrain of the Giants Causeway ascending over 1000m along this dramatic coastline. The team have been training and we are so excited to get back out there and continue raising funds to support vital melanoma research to continue developing new treatments to save more lives. https://www.justgiving.com/fundraising/shiona-ramagegiantscauseway

Over the last 5 years impressive progress has been made for the treatment of advanced melanoma with the introduction of immunotherapy and targeted treatment and for many patients who respond to these treatments the outlook is much brighter. However much still needs to be done as many patients (50%) don’t respond to immunotherapy and resistance is often developed to targeted therapy.  In the UK alone we still lose 2500 people every year to melanoma.

Despite the COVID 19 pandemic involving a partial closure of trials at The Royal Marsden the hospital is now in progress of getting trials back up and running as quickly as possible. One of the major programmes the melanoma research team is working on is trying to understand which patients with advanced disease will respond to immunotherapy treatment.  Immunotherapy drugs boost the body’s own immune system to attack cancer cells.

Dr Samra Turajilic – the Melanoma Unit’s Consultant Medical Oncolologist. – has found that a particular type of mutation in melanoma patients, called Frame Shift Mutation responds strongly to these kind of immunotherapy drugs. By analysing many different melanoma datasets over the last year, the Unit now have more information about Frame Shift Mutations.  From this information, the team is now developing a more precise way to stratify patients according to how likely they are to benefit from this kind of immunotherapy.

This research has also presented new approaches to information on locating and targeting cancerous cells.  Being able to identify Frame Shift Mutations may also allow researchers to look for and find cancerous cells in the body which are otherwise difficult to locate. This has great implications for the development of new therapy approaches.

Using techniques such as this to study the samples has enabled the team to make novel observations regarding the way that melanoma spreads to other sites in the body. This has shone a light on how these cancerous cells escape the immune system helping to understand why tumour response to immune therapies in melanoma cancer patients is so diverse.

These preliminary findings have already been presented at numerous scientific meetings and ongoing work in this area will significantly advance the Melanoma Unit’s understanding of how cancer evolves and remains undetected in the immune system.

A big thank you to the melanoma research team for providing this update on the melanoma immunotherapy project. Its thanks to your support and generosity that the Melanoma Unit at the Royal Marsden can continue to be at the forefront of melanoma research improving the lives of patients world wide and I feel very fortunate to be treated at such a wonderful hospital.

Team Shomelanoma has been out training for the next challenge in various locations around the UK and here are a few pics. The conclusion this week after a few steep climbs on the SW Coastal Path was that the legs may not have had enough hill training in preparation for the Giants Causeway. With just under 2 weeks to go we are praying that the lashing storms of the Welsh mountains stay away from the Irish Coast but at the end of October in Northern Ireland we will be preparing for all eventualities. A full update on the Giants Causeway Challenge will be provided in the next blog.

Team Shomelanoma training on Devon’s SW Coastal Path

In the meantime thank you as always for all of your generous support it means the world.  This has been a very difficult year for everyone and I hope that you are all staying safe and I’ll be back with more Shomelanoma Adventures soon. 

Stunning views on Devon’s SW Coastal Path
Fundraising · Uncategorized

The DECEMBER Factor and a HUGE THANK YOU.

67561B94-944C-4F4E-8104-2E56AAA37E6E

As December arrives with the festive season in full force, I always find myself feeling slightly nervous. This year I was very lucky to spend most of November on an amazing adventure to Peru (more of that later) and while away I found myself thinking less about melanoma. But it was back to reality last week with 2 appointments at Marsden HQ one to see the Dermatologist for my skin check up and the other on Friday to see my Oncologist. At my Friday appointment my Doctor reminded me that I had now been on the targeted drug treatment Debrafenib and Trametinib for 2 years and its good news that it continues to keep my melanoma under control. I did mention that I always feel a bit anxious when December rolls round as I had such horrible news in Dec 2016 and 2017 and I suppose its only natural that these memories rear their ugly head at this time of year. I also became quite obsessed last December with the fact that on average my treatment works for 12 months before the melanoma develops resistance. I have been repeatedly told that this is an average and for some patients it can work for years. I was also interested to know if I was still getting any benefit from the immunotherapy treatment I had or was it just the targeted treatment that was keeping my disease under control. I was told that is the million-dollar question and he didn’t know the answer. There were a number of patients who had both immunotherapy and targeted treatment and their disease was under control and that I should focus on the most important facts, which was that my melanoma is under control and I was feeling well.

Every 6 months I also have a skin check up with the Dermatologist Dr Fearfield and last week she noticed that the moles on my body have faded further and some of them completely disappeared. This is positive and shows the immune system response against the antigens shared by the normal cells in the melnomacytes and the melanoma. This could be caused by the targeted treatment that I am currently on or the immunotherapy treatment I had previously but it is generally seen as a good sign and will continue to be monitored.

Before leaving for Peru, I was at the hospital for my latest scan results, which were good, and also to present Professor Larkin with the big cheque for £50,000 to support the melanoma research projects at the Royal Marsden. This is a result of all of the shomelanoma fundraising efforts and I want to say a HUGE thank you to each and every one of you who have been instrumental in taking part and generously supporting all of the fundraising challenges. When I was hospitalised for 3 weeks in June 2017 for severe side effects from my immunotherapy treatment I had no idea what the future held but decided I wanted to give something back for the outstanding care I have and continue to receive by raising some funds for further melanoma research. There was no plan or target in mind but along the way so many people have contributed by organizing their own events, taking part in wild challenges, dancing for hours at the danceathon, laughed at the comedy night (or waxathon) and given so much to all of these efforts. David and I have enjoyed and had many laughs and a few tears (me not him) doing these challenges and have created many special memories along the way. I feel extremely fortunate to have such fantastic family and friends both near and far and your support has raised this incredible sum of money to support the research of my Oncologist Professor James Larkin and his wonderful melanoma team at the Royal Marsden who are doing a damn fine job keeping me alive. They have also involved me in the decisions of where the funds raised are allocated and are keeping me regularly updated on the immunotherapy research projects and the latest update of was included win my last blog. Whilst hugely impressive progress has been there are still too many patients dying from the disease and there is a long way to go which is why the fundraising to support melanoma research is so important and you will not be surprised to know we are already planning the 2020 challenges and David is already bracing himself.

Here are a few pictures from the latest fundraising efforts, which in mid October saw a big team running the Royal Parks Half Marathon and raising a lot of money. It was a wet muddy day but all of the magnificent eight runners Dave, Matt, Chris, Fraser, Jo, Tony, Christy, Ronan and Thomas did a fine job and raised over £7,000 towards the fundraising. Well done to all, David will be back for round 4 next year the under 2-hour target is there to be broken.

Last weekend the gorgeous Nicki Millward ran the Cayman Islands half marathon in very hot conditions in a speedy 1.57 so huge congratulations to her plus a big thank you to all her family and friends who have generously supported the fundraising efforts. Last Saturday we all got into the Xmas spirit when Liz, Johnny and Clem had an incredible joint birthday/anniversary party for and in lieu of presents had their lovely family and friends donate to the Shomelanoma fundraising. Their incredible generosity helped us reach an overall total over £57K, which is simply incredible.

In early November David and I went to see adventurer Ben Fogle on his tour Tales of the Wilderness at the local Wimbledon Theatre. I have followed Ben’s adventures for the last few years love his TV show “New Lives in the Wild” and his maverick adventurer approach to life. One thing he said in his talk really resonated, as I was about to head off on the latest adventure trip to Peru “Smile, Look up and Dream, Dare, Do”. I thought back to experiencing the horrid side effects when I started the current Dab/Tram treatment, spending New Year 17/18 in A &E fearing I would never again be well enough to leave the UK far less go on adventures to South America and I felt very grateful and fortunate to be well enough to go on the latest adventure and take some of Ben’s maverick adventure attitude with me.

Peru is such a diverse country; we started off in the crazy city of Lima, which made Bangkok look calm. We loved the arty district of Barranca where we stayed in a colonial guesthouse – Second Home of the renowned Peruvian artist Victor Delfin. We then moved onto Arequipa and the stunning sights of the Colca Canyon. From there it was onto staying with a Peruvian family in Lake Titicaca (the highest inland lake in the world at 4000m) on the island of Uros where the lodging was remote and built on an floating island made of reeds with solar power and a compost toilet. It was utterly stunning, had no wifi and felt lovely to be totally away from the craziness of modern life, chilling out on a boat, learning about the Peruvian way of life and watching my favourite blue-beaked duck of lake Titicaca. It was a long way from London. The last night we were reminded of the remote location when a fellow traveller developed a bad eye infection and had to cut short his stay and be taken for medical help. I then read in the Lonely Planet if you do get sick in Lake Titicaca don’t think twice about heading to La Paz which is the Bolivian capital as the medical care in Puno is poor. Fortunately I didn’t have any issues and was happy to move on to Cusco, Machu Picchu and the Sacred Valley where we spent a week exploring, hiking in the mountains and staying at the fabulous Explora Hotel, which exceeded all expectations. Finally we had the last few days in Mancora in the north of Peru chilling out by the beach before the long journey back to reality. It was an incredible trip and I loved every minute. Here are a few pics.

 

With Xmas just over a week away I want to wish you all a happy festive period with all your family and friends and thank you once again for your amazing support. Here’s to a happy and healthy 2020 and to more Shomelanoma adventures … stay tuned.