Hope, Fundraising Research and Stage 4 Melanoma

Melanoma has been hitting the headlines recently with the release of the 5 year results of the checkmate 67 trial for combination immunotherapy drugs (ipilimumab and nivolumab) which shows the drugs can stop or reverse the progression of advanced melanoma in more than one in two patients. This is truly ground breaking when you consider that less than 10 years ago only one in 20 Stage IV patients survived for 5 years or more and most faced a life expectancy of between 6 to 9 months. My Oncologist led the trial and here he is at the European Oncology Conference (ESMO) discussing the trial results

https://www.youtube.com/watch?v=Xgk54YXpL1E

However, whilst impressive progress, immunotherapy doesn’t work for around 50% of patients and it can have seriously life debilitating side effects; there are still far too many melanoma patients are still succumbing to the disease. There is so much work still to be done and that’s why the fundraising to support the melanoma research at the Royal Marsden is so important (more details on the melanoma research later). The team working on the research is pictured here led by Dr Samra Turajilic, Dr Lewis Au and Dr Lavinia Spain who all work with Professor Larkin.

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I was recently back at Marsden HQ and my latest scan results were good now 21 months on from starting Dab/Tram it continues to keep my melanoma under control for which I am hugely grateful. At my latest consultation I met the new team of registrars who have recently joined the melanoma team. After hearing my results I was asked “So Shiona how are you” and my response was “Well we’ve booked to go to Peru” at which my doctor replied “Most patients when I ask that question would answer with how they are feeling from a medical perspective and any side effects experienced but you have gone straight to the important things” I was then feeling slightly embarrassed but I hadn’t experienced any side effects in the previous month and did have questions about the drugs I am on and the high altitude in Peru. I was also thinking perhaps I had not made the best impression on the 3 keen new junior doctors who I had just met for the first time. Anyway my Oncologist knows me well and David was finding it all rather amusing. I guess it did show I am getting on with my current “living in the present life”.

The living in the present can be hard as anyone going through stage IV cancer treatment will know. I have gone from the utter fear of planning anything early last year due to bad side effects and cancelling trips to now feeling lets just book the trip. I like to have scans close to going away on holiday for peace of mind and also of course the insurance company requires it too. Recently though I had a sharp reminder of how quickly I can go from feeling well to feeling awful. A couple of weeks ago I was attending my lovely brother in law and gorgeous new sister in law’s wedding in Manchester. It was a stunning day with beautiful September weather and so much fun seeing all the family and partying at the wedding. We returned to London the following evening and at 3am on Sunday morning I woke up bolt upright feeling awful knowing I was going to be sick and that was the start of a horrible 36 hours of vomiting and diahorrea that I wondered if it would ever stop. I couldn’t get my head off the pillow all day on the Sunday, as I was feeling so awful. At one point David said to be don’t you think you might feel better if you come downstairs so I dragged myself out of bed and went downstairs only to be running to the bathroom 5 mins later. It definitely wasn’t the alcohol from the wedding, as I don’t drink anymore. Although I was feeling awful, I didn’t have a fever and I knew if I phoned the Macmillan hotline at the Marsden on a Sunday I would probably get sent to A and E so decided to just hang on and see how I was by Monday morning.   The following morning I had stopped being sick and the D and V was under control so no need for an unscheduled trip to Marsden HQ. I think I just caught a vomit bug as Dave’s cousin it materialised had caught the same bug. Anyway it has certainly made me rethink any long bus trips planned in Peru and also remember how quickly I can go from feeling good to very unwell.

 

 

Over the last couple of months since finishing the Welsh 3000’s there has been a lot more time to see family and friends as I treasure spending time with them and I know that it may sound a bit of a cliché but its what’s important in life. There has been a lovely trip to Scotland to see my parents and also some of the Scottish family, Anne and Fred’s Golden Wedding Celebration Party in Derbyshire, a trip to Salcombe with my good friend Jen, the Hadcroft wedding in Manchester and a girls trip to Hertfordshire to celebrate Liz’s bday. Here are a few pics from the recent adventures.

 

The Shomelanoma fundraising has also received a boost over the last couple of months. Anne and Fred (David’s Aunt and Uncle) celebrated their Golden Wedding Anniversary and had a party to celebrate which was a lot of fun. Their guests generously donated to the melanoma research at the Royal Marsden rather than give gifts and an incredible £730 was raised so huge thank you to Anne and Fred plus all of their guests for their generous donations.

Next up the Shomelanoma team will once again be running the Royal Parks Half Marathon. We have a big team this year including David, Matt, Fraser, Chris, Tony, Christy, Ronan, Thomas and Jo who are all training hard and will be taking to the parks of London on Sunday 13 October. If you would like to support them full details are below and BIG thank you to all of you, look out for the photos in the next blog.

https://www.justgiving.com/fundraising/shomelanomarphm2019

Thanks to all of your generous support we are now less than £1k away from the Team Shomelanoma £50k fundraising target which is just incredible and I have to say a massive thank you again to everyone of you that has taken part in a fundraising event or donated to support all of the various challenges. The funding is being allocated to support the melanoma research programme and here is the latest update from Dr Lavinia Spain.

The Melanoma Research Programme is currently working on samples collected from 2 complementary studies, involving >300 patients.  The first, Melanoma TRACERx (TRAcking Cancer Evolution through therapy (Rx)), is a research study aimed at transforming our understanding of cancer heterogeneity (differences in cancer genetics from cell to cell even within the same patient) and evolution (how cancer evolves over time within the same patient). Through longitudinal analysis of genetic information, Melanoma TRACERx ultimately seeks to understand how and why melanomas progress as well as examine the variation in response to treatment.  The second is the PEACE study, a national post-mortem study enabling sampling of tumours at multiple metastatic sites. 

At present we are focused on cohort of 14 cases for analysis, leveraging samples obtained through both studies. Between 10 and 70 samples have been collected from each patient. In a normal study, usually only 2 to 3 samples are collected. This now means the team has around 500 – 700 patient samples to analyse. With this depth of data we hope to answer important questions about immunotherapy and tumour heterogeneity, making a unique contribution to the scientific literature.  Both DNA and RNA samples have been extracted for sequencing, a process that can take up to two months to prepare accurately and to the required standards of quality. Using the latest genetic sequencing technology hundreds of patient samples have been sequenced. This data is now being interpreted by our team’s bioinformaticians based at the Francis Crick Institute. This is a specialist role which applies information technology to analyse the vast amount of biological data. The aim is to identify specific mutations or proteins that influence immune response which can be investigated further. The analysis of the preliminary data is currently on-going. 

The team aim to publish their preliminary data in a leading scientific journal in order to significantly advance our basic understanding of why there may be heterogeneity in tumour response to immune therapies. Over the next 12 – 18 months the team aim to complete their final analysis of the data collected.

In parallel we are continuing with a number of other results projects: 1) collecting blood samples from a large cohort of patients in order to evaluate how tumour DNA circulating in the bloodstream may be used to predict relapse and response to therapy, 2) looking at matched primary melanomas and their metastases to elucidate the nature of evolution and spread and 3) determining how ‘biomarkers’ (distinct measurable characteristics of a tumour) may be used to predict treatment response.  

We are always incredibly grateful for the generosity of our patients and their families who contribute to these studies.

Stay tuned for more Shomelanoma adventures soon.

 

 

 

 

 

 

 

 

 

Friendships, Welsh Mountains and Melanoma

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The week before the Shomelanoma team set off for the latest mountain challenge I was back at Marsden HQ for the latest scan results. It feels like the time between scans passes so quickly as I try to cram as much as possible when feeling well knowing that everything could change at the next consultation. Fortunately the latest scans were good and the Dab/Tram continues to work 19 months on from when I started the latest treatment so I am feeling very thankful.

Managing anxiety before scans is never easy but I have found that it helps to be away from London the weekend before getting results as I am occupied and thinking about other things. Dave and I were in the Peak District the weekend before the latest scan results as I was celebrating my birthday whilst getting in some last minute training on Kinder Scout for the Welsh 3000’s. After getting my scan results and telling my Oncologist about the latest madcap mountain challenge we had the green light to set to off for the Welsh mountains.

We have a wonderful group of special friends who have accompanied us on these challenges and this year was no exception. Tony and Sam, Phil, Colin and of course the rock star husband Dave all took precious time away to train with us, spending the last few months walking up and down hills across the UK from the Brecon Beacons to Cornwall and the Malvern Hills to Scotland. There have been many amusing moments and lots of banter on the walks that keeps us all entertained and I always looking forward to our precious time spent together

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After last year’s extreme heat on the Jurassic Coast 100km, this year the Welsh mountains had the opposite weather in store for us. An idyllic summers eve in the beautiful coastal town of Conwy in a lovely pub on the north Welsh coast was a false dawn as the next morning the gales and rain had set in as we arrived at the hostel for the safety briefing before setting off to start the Welsh 3000’s. A message from our guide the day before telling us to have enough clothing to get soaked for 3 days was the warning that the weather gods were not going to be on our side.

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What followed was 3 days of extreme weather high gales and driving rain, which made the steep terrain difficult to navigate, and the ground underfoot slippy. Over the whole 3 days there were hardly any breaks in the relentless wind and rain and it is safe to say that you often had to question is this really July in the UK. This was an extreme challenge and a big step up from the 3 Peaks that we had completed 4 years ago. With the exception of summit night on Kilimanjaro this was the toughest challenge yet. We all had moments over the 3 days thinking (what the fXXX are we doing this for and get me to a dry pub ASAP). There were no comfy beds to go back to in the evening and the boy’s dorm with 10 bunks and low ceilings reminded me of travelling in my 20’s and not in a good way. We were all longing for the comfy bed of the pub in Conwy. We weren’t allowed up two of the peaks: Tryfan and Crib Goch due to the dangerous windy conditions. All of the team were amazing and showed real determination to complete the challenge. The Charity Challenge guides were the right mix of encouragement in difficult conditions and also keeping us safe. The final day was a real struggle for me as I was full of the cold, tired, wet and after 3 days I had had enough BUT the gang were great at keeping me going, my smile had pretty much deserted me by this stage and it was just blissful to arrive at the bottom of Snowdon, have an ice cream and get changed into dry clothes before heading back home. As I reflect back on the weekend now I feel super proud of all of the team there was never any doubt of anyone giving up, we have raised more valuable funds for the wonderful melanoma team at the Royal Marsden who are doing a fine job keeping me well enough to undertake these challenges. In addition, I didn’t think of melanoma once over the whole weekend, as I was too busy worrying about not falling flat on my face. It was a privilege to undertake the challenge with all of the team and big thank you also to the Charity Challenge guides looking after us so well Andy, Rich, George and Fiona were all fantastic as was Sarah with all the lovely food.

Now that the team are home, rested and recovered I have been feeling a bit sad that its all over (you may think this sounds strange but I can assure you that Dave is over the moon that its over!) but there is such a build up and focus goes into these challenges that when they are over you naturally start thinking about what’s next and hoping that I will be well enough to continue undertaking these challenges. They really do help keep me motivated and having a goal to work towards helps me to stay fit plus I can honestly say that it’s as much about the mental side as they help to keep my head clear and I love being out in the mountains.

Of course a massive thank you has to go to everyone whose generous donations have supported the latest challenge. We have now raised over £46k in a little over two years, which is almost beyond my comprehension and for everybody that has donated, taken part and/or organized an event, thank you from the bottom of my heart. It really does inspire and motivate me to do more in the future. We will be receiving a full update on the melanoma research project that the money raised is supporting and I will provide a full update in the next blog.

The last couple of weeks have seen some of our lovely Hong Kong friends passing through London and it has been great to catch up with them. The summer is passing quickly and after spending so many weekends away from London to climb mountains it is nice to spend some time at home. As you head out to enjoy the summer sun remember to slap on the factor 50, cover up, stay out of the sun between 11 and 3 and check your skin regularly and watch out for the ABCDE rules

https://www.melanomauk.org.uk/signs-and-symptoms

You may remember Alfie Ranstead who earlier in the summer did a 50km bike ride to raise funds for the melanoma research at RMH. He also created this fabulous video to help raise awareness about melanoma and how to prevent it. It has been shown to all of the pupils at his school and only takes a couple of minutes to watch. Well done Alfie you are a superstar. https://youtu.be/LpD99yihrNw ,

Thanks as always for all your support and tune in for more shomelanoma adventures next month.

 

 

 

 

 

 

 

Mountains to Climb, Milestones and Melanoma

I woke up at 3 am one night last week and the first thought that came to my mind was Mountains, Milestones and then I remembered the dreaded Melanoma. I did think right with the upcoming Welsh 3000’s mountain challenge what a perfect title for the next blog, so I wrote it down and went back to sleep. As my 3 year cancerversary passed on June 15, I have been reflecting on how life has changed over the last 3 years but also feeling very fortunate still to be here.

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I have been on a 6-week break from the hospital, which has been totally blissful, of course I love the medical team at Marsden HQ but not having to visit the hospital has been good for the mind and soul. I also count myself very fortunate to have been well enough to travel to some amazing places over the last few weeks. I find that getting away from London even for a short period clears the mind and helps me to forget about melanoma for a while which is only a good thing. In the last month I have been lucky to go back to New York, spend a few days in Fife with the parentals, climb hills in the Brecon Beacons and am just back from a week in my happy place Cornwall (more of that later).

Summer has fully arrived in the UK and its very much a case of sun’s out guns out (well those of you watching Love Island know that anyway). I have recently returned to the local gym to up my fitness levels for the upcoming mountain challenge. A couple of weeks ago, I overheard a discussion amongst the girls about wanting a tan now its summer and one of them mentioned going on a sunbed. Another girl then tried to dissuade her saying its much safer to have a fake tan and relayed a story about a friend who had died of melanoma. I honestly can’t believe how many young people still use sunbeds in the UK and are not fully aware of the killer machines that they are. Melanoma UK has been trying to get these banned as they are in Brazil and Australia

https://petition.parliament.uk/petitions/237086

Whilst in Cornwall beach season was kicking off, temperatures rising and the Brits were at the beach crisping themselves to a shade of beetroot. This did make me realize just how much awareness still need to be done to educate people in protecting their skin. You don’t have to burn to get a melanoma and there’s nothing healthy about a tan. I recommend you fake it and if you are looking for a good fake tan I can recommend Vita Liberata Body Blur that is idiot proof to apply covers up scars and gives a light colour https://www.boots.com/vita-liberata-body-blur-instant-skin-finish-100ml-10208481 . But most importantly stay safe in the sun wear factor 50, cover up and stay out of the sun between 11 and 3.

The next big challenge coming up in 2 weeks is the Welsh 3000’s . As many of you already know, I love being in the mountains and after having back surgery 5 years ago, my surgeon told me no more long distance running, I replaced it with hiking up mountains. Since my melanoma diagnosis, I have loved being in the mountains even more. I find it focuses the mind, I forget about melanoma and it helps keep me fit. It also provides me with a goal and as someone who is generally positive and motivated I love to have a challenge.

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Every year for the past 5 years we have done a mountain challenge and this year is no exception. From the Three Peaks to Kilimanjaro this year it is the Welsh 3000’s. This is a HUGE challenge especially for me currently on treatment and involves climbing the 15 Welsh peaks over 3000 feet in one weekend involving steep ascents and descents of over 4000 m in one weekend. The challenge is rated as extreme and I am starting to feel nervous at the prospect of what’s in store. Dave and I are doing the challenge with the fantastic Tony, Sam, Phil and Colin who have undertaken many of the previous challenges and we will be raising funds for melanoma research at the Royal Marsden where I continue to be treated for stage 4 melanoma.

Full details of the challenge are here and if you would like to support the team it would be hugely appreciated and there will be a full update on the next blog.

https://www.justgiving.com/fundraising/shomelanoma-welsh3000s

Earlier this week David and I attended a patient evening at the Royal Marsden, which was discussing “Pioneering Treatment: What does the future hold for Melanoma and Urological Cancers? “ which was a very informative evening and covered topics from the current landscape for melanoma and kidney cancer treatment to advances in the precision of radiotherapy to the impact on patient quality of life of new melanoma treatments and the evolution of cancer where Dr Samra Turajilic describes how cancer evolves to resist treatment and how we need to understand how different cancer cells in a tumour change and how to adapt to improve patient outcomes. This is a hugely complex subject and the fact that everyone’s cancer is different makes it even more challenging. It was a very enjoyable evening and was lovely to see some of the other patients who are treated at the Marsden. I even had a couple of them come up and introduce themselves as they recognized me from reading this blog, which was lovely. There was also a patient in attendance from the original clinical trial, for the drugs I am currently taking, whose melanoma has been successfully controlled for the last five years.

A couple of weeks ago, there was a very informative programme on BBC4, following George McGavin “A Year to save my Life” and followed the entomologist and TV presenter through his treatment for malignant melanoma on his heel. Given his scientific background, he was intrigued at understanding more about melanoma and how it evolves. The programme also highlighted a very real benefit and development that was not available to patients like myself just 2½ years ago. George’s melanoma had spread to his lymph nodes in his groin (classified as Stage 3) and rather than have surgery to remove his lymph nodes, he was able to have adjuvant treatment and took dab/tram (my current medication) to treat his melanoma. In George’s case, this successfully treated the melanoma and prevented intrusive surgery. Previously the only option for patients at Stage 3 was surgery and thereafter to “watch and wait”. For patients, this is a huge step forward in that they now feel that the disease is being proactively treated. If you would like to watch, here is the link :

https://www.bbc.co.uk/iplayer/episode/m000696j/a-year-to-save-my-life-george-mcgavin-and-melanoma

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The latest superstar Shomelanoma fundraising efforts for melanoma research at the Royal Marsden Cancer Charity come from from Alfie Ranstead, and Jacqueline Varty. Alfie Ranstead (14) cycled 50 km along the Ridgeway in Wiltshire. He had never cycled that far before and successfully completed his challenge cycling with his 2 brothers Tom and Will in 3.5 hours. Also in cycling mode young Will Baldock (6) recently completed a hilly 10 km cycle in St Albans. He had plenty of snacks, his Dad cycling with him and a big cake awaiting him at the finish to keep him motivated. Finally my school friend Jacqueline Varty completed the Edinburgh half marathon last weekend and also did a PB. Massive congratulations and thank you to all of you.

 

The latest fundraising efforts have sent the total Shomelanoma fundraising efforts to close to £42k in 2 years and are helping fund further melanoma research to help keep cancer patients like me alive . We have now set the target at £50k and are hoping to reach that milestone by the end of the year.

Finally here are a few photos from the recent travels. I really loved returning to New York a city I used to visit frequently with work but since the melanoma rollercoaster I hadn’t been back. It was lovely to be there as a tourist and stay in lower Manhattan to explore the city that is up there as one of my favourite cities in the world. We were also very fortunate to have fabulous weather for our week in Cornwall, this really is my happy place as my Grandfathers family comes from Sennen Cove/St Just I have this feeling of being at home when I go there. I love the area around the Lizard and it’s really hard to believe you are in the UK. We had a wonderful week there and I was sad to return to London but my 6 weeks of no visits to the Marsden had come to an end and it was time to return to Chelsea to see Professor Larkin and the team.

Stay tuned for the next installment and full details of the latest mountain challenge when the Shomelanoma team tackles the Welsh 3000’s.

 

 

 

 

Stage 4 Melanoma 2 Years On – All Stable

Two years ago on March 31 2017, I received the news from my Oncologist that my melanoma had spread to my brain. Two years on, I am hugely thankful to still be here and very much living life to the full. My latest scans show that my melanoma is stable (good news for any stage 4 cancer patient) and my current targeted treatment Debrafenib/Trametinib which I take in tablet format twice daily 12 hours apart continues to work 16 months on. I am hugely grateful to all of the amazing melanoma team at the Royal Marsden Hospital led by my Oncologist Professor James Larkin who continue to look after me so well.

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For the past couple of months I have had the feeling, I am living on borrowed time, which is probably hard to relate to if you don’t have an incurable disease but fellow stage 4 cancer patients will resonate with this feeling. In the run up to the January scans, I became a bit obsessed with the fact the current treatment I am receiving works on average for 10 to 12 months and I have now exceeded that which is good news. My Oncologist reminds me that for some patients it can work for years and often patients have treatments in a different sequence. For the latest scans I felt much calmer until the morning of the results when I always feel nervous and it was a huge relief to hear everything was stable. For now I am continuing the kick ass enjoy every day mantra and getting on with my life as I know how quickly the situation could change.

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It’s been an exciting month and one of the highlights was when David and I were invited to visit the Francis Crick Institute (https://www.crick.ac.uk/) to have a tour and see where some of the research that the fundraising we have been doing is taking place. The Crick is a biomedical research institute who works to understand why disease develops and to find new ways to prevent, diagnose and treat a range of illnesses including cancer, heart disease, stroke, infection and neurogenerative disease. There are over 1200 scientists working there and the building is amazing.

Dr Lewis Au, Clinical Fellow for the Royal Marsden who is part of Professor Larkin’s team gave us a tour of the Crick and what an impressive building it is. As it is open plan the premise is very much on the collaboration between all of the scientists working there. The current research is looking to understand immune related toxicities by multifaceted profiling. We were taken to the wet lab where the scientists are examining specific tissue samples of tumours. We met one of the scientists on the team Alan (also Scottish) who showed us samples taken of a large tumour found in the kidney. He mentioned that previously they would take one biopsy from the tumour but in this example, the tumour was sliced into four sections with up to 20 samples taken from each section, e.g. 80 Nr samples in total. They are then doing specific genomic and immune profiling of the patient and the tumour which takes place in the dry lab where the analysis takes place. The goal of the research is to better understand how tumours develop as they metastasize (spread) around the body. In the context of immunotherapy, they hope to develop a panel of biomarkers to identify patients at risk of immunotherapy toxicity and develop supplementary/complimentary treatments for prevention and treatment of toxicity. As a patient who has experienced severe toxicity to my liver when I had immunotherapy this research is particularly personal to me. The whole experience was really quite fascinating and made me question if I had gone into the correct career. We loved it and it was the highlight of my month and a big thank you to Dr Lewis Au for hosting us his scientist colleague Alan who was explaining everything to us and it was lovely to see Dr Samra Turajlic too.

My 2 year anniversary with no booze is on April 10. I can hardly believe it and am often asked if I miss it. The honest answer is no with the exception of the occasional summer night out when it’s warm and a glass of rose is tempting. I know I was probably drinking too much before my stage 4 melanoma diagnosis and from a health perspective I definitely feel better. I am now the one at the party watching everyone else when they have had one too many knowing all too well I have been there many a time. I can still party with the best of them and I now remember the repeated nonsense that everyone else talks at 1am but for now I am happy with my clear alcohol free head and trying out the latest alcohol free cocktails on a night out.

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As well as monthly appointments with the Oncology team I also have check ups with the Dermatologist every 6 months. Last week my check up proved quite interesting. As I have mentioned before, I have developed 2 vitiligo patches on my face and this is a known side effect of my melanoma treatment. The Dermatologist has also noticed that some of the moles on my body have disappeared and some have become de-pigmented and lighter. The immunotherapy or the targeted treatment could have caused this and it shows the immune system response against antigens shared by the normal melanocytes and melanoma cells. I was also sent for follow up photographs so that this can be compared against the photos from 2 years ago when I started treatment and also moving forward.

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The Shomelanoma team has started training for the next big challenge The Welsh 3000s which is coming up at the end of July. It looks TOUGH 15 mountains over 3000 feet in just over 48 hours with some scrambling…….. After the first training walk last week of 20km and the sore legs the next day there is a long way to go. More to come ………

We also have a big team signed up for the Royal Parks half marathon in October. This is the one Dave is attempting to run in under 2 hours. His park run training is commencing soon plus mentor guidance from his cousin Matt who will also be running. If you would like to join us please let me know we’ll be having a party after this one!

https://www.justgiving.com/teams/shomelanoma

As always thanks again for all your wonderful support, as we move into the warmer weather please take care to protect your skin slap on the factor 50 even when its cloudy and check your skin for any changes in moles and go to see the GP. Better to be safe than sorry. Melanoma is a nasty disease and even although there have been huge advances in treatment there are still 7 people losing their lives every day in the UK alone. May is melanoma awareness month so more to come next month.

 

 

 

 

 

 

 

 

 

Melanoma, Mind Games and a Big Adventure

After David’s blog last month looking at the Partner’s view of living with cancer it’s back to me this month. I’ve been feeling pretty good lately and found myself feeling more confident that my Xmas Pressie from Dave may become reality – Dream, Dare, Do – An adventure of a lifetime to Argentina where I had always wanted to visit.

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After experiencing a number of fevers (one of the main side effects of the drugs I am on) earlier in the year, I felt unsure I would be comfortable leaving the security of the UK with Marsden HQ on speed dial 20 mins away from our home. After going to the Alps in the summer, Sardinia in September I started to feel more comfortable about overseas trips and the big adventure may become reality. First there was the hurdle of the regular scans to overcome. My oncologist had tentatively said that he was ok for me to travel … subject to my next scans.

I went through my usual routine over the weekend before getting scan results and tried to keep scanxiety at bay. On our way to Chelsea on the Monday, I began to feel sick and my heart was pounding like going to sit an A level exam. The wait before the appointment felt excruciatingly long and I must have visited the loo about 3 times in less than half an hour. I am also conscious of the fact that the drugs that I am on work to control melanoma for an average of 10 to 12 months and I am approaching that timeframe. My Oncologist has told me to try not to worry and remember that it is an average, every patient is different. Finally my name was called and Professor Larkin told me the scans were all good and I could go to Argentina. It was a huge relief and I left the hospital feeling very excited.

However, the excitement didn’t last long as 24 hours later I began to feel sick and felt a fever was coming on. This came as a bit of a shock to the system as I hadn’t experienced one since March and it was so soon after receiving the good news from my scans.  As you know living with stage 4 melanoma is anything but predictable. Just 2 days later my temperature was 39 degrees and I was back at the hospital feeling awful. Blood tests revealed that I had caught a virus, which was probably compounded by my medication and I was told to prepare for a stormy 48 hours and it was time to rest and do nothing. After 3 days of rest as if by magic I started to feel human again. After a return visit to Marsden HQ a few days later to recheck my bloods the inflammatory markers had returned to normal which was a huge relief. The experience was a huge reminder on how quickly things can change.

Over the last couple of months I have also developed some small vitiligo patches on my cheeks. I am more conscious of these than others. I also had my regular check up with my dermatologist, which enabled me to discuss these with her. Interestingly, I have also developed slight vitiligo rings around a couple of moles on my back. It has been explained that these are generally viewed (albeit not conclusive) as a positive in terms of melanoma control and may be a sign that my immunotherapy treatment is still having a positive impact on melanoma control

Dealing with the mental side of melanoma is as much of a challenge as the physical side. There is no one size fits all solution and even although I am pretty strong mentally and have learned to live in the present, you just never know when a bout of anxiety or worry is going to hit you. I have my coping mechanisms and as I have written in the past one of the best solutions I have found of keeping myself calm and switching the mind off the melanoma worry has been yoga and pilates. I have become an avid yoga fan practicing at least twice a week at the gorgeous Samsara studios in SW London. I was also lucky to recently take the yoga a step further and head off on my first yoga holiday to Majorca with my gorgeous friend Jen. This was a different somewhat calmer affair than previous girly trips with good friends Liz and Jen. Up at 7, yoga practice at 8 watching the sun come up over the beach for 2 hours it was quite blissful and very relaxing. I completely forgot about the melanoma and focused on trying to improve my vinyasa flows and poses. It was lovely to spend quality time with Jen catching up on gossip in such a relaxing environment and I came home after 4 days feeling in a relaxed state of zen.

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Now whilst yoga can’t cure my cancer anything that helps improve my mental well-being is good in my book. I know that some of the cancer charities Macmillan, Maggies also provide counseling and many patients find this very helpful, I certainly haven’t ruled this out but I haven’t felt the need in my current state of mind.

During the last month I was fortunate to be asked by the Royal Marsden Cancer Charity to join them for a visit to speak to the staff of one of their major corporate supporters Ralph Lauren. Every year, during the month of October Ralph Lauren run their “Pink Pony “campaign which is their corporate wide initiative in the fight against cancer. The Royal Marsden Cancer Charity is the UK benefactor with Ralph Lauren organizing a number of fundraising activities throughout the year to engage their staff and customers. I spoke on behalf of the charity to thank Ralph Lauren and also share my patient story and my experience of the Marsden and their teams. It was a hugely positive day and I really loved being part of it and it was really lovely to see how engaged and passionate the Ralph Lauren staff are about supporting the wonderful work of the Royal Marsden Charity. I also received a lovely framed letter from the Head of the Royal Marsden Cancer Charity thanking everyone involved in the Shomelanoma fundraising, which was hugely appreciated.

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On our 13th wedding anniversary (14 October) David and his good friend Fraser took part in the latest Shomelanoma fundraising activity Royal Parks Half Marathon. It was pouring with rain as they set off through the beautiful Royal Parks a far cry from the gorgeous sunny day of last year but they both did a fabulous job and arriving over the finish line completely soaked but 10 minutes quicker than last year to run in 2hrs 18. The challenge is now on to run under 2hrs for 2019. Well done to them both and thank you to everyone who has supported them.

https://www.justgiving.com/fundraising/shomelanomarphm2018

Next up north of the border my gorgeous cousin and his wife Iain and Siobhan Ramage are taking things to another level with the sponsored waxathon and fundraising evening. We have just heard that the activities have raised £2000 which is amazing and there will follow a full report in the next blog along with future fundraising plans for 2019.

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As the nights close in and weather turns wintery please remember to do your monthly skin check and if you see any changes in your moles see your GP. Don’t join the statistics 7 people die of melanoma in the UK every day and once it spreads its very difficult to control. UV rays from sunbeds have been shown to contribute to rising cases of melanoma and we want them banned in the UK as they already are in Brazil and Australia. I have never used sunbeds but please help support Melanoma UK and sign and share the petition below.

https://petition.parliament.uk/petitions/223903

Living with Cancer – A Partner’s Perspective

Shiona thought it would be interesting for me to write a guest blog so that you get to hear about things from my perspective. I am always slightly bemused when Shiona refers to me as her rockstar husband in her blogs – I don’t play any musical instruments and my promising early singing career as Joseph whilst at Junior School was subsequently curtailed by a nodule on my vocal cords … however I did still appreciate the card I received from Liz, Johnny and Clem earlier this year!

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At the outset of this journey, my knowledge of melanoma was limited to basic awareness only. I recall family holidays in the 80’s when my late Dad used to pride himself on applying his factor 4 piz buin cooking oil whilst I myself had to turn to applying natural yoghurt to the top of my sadly burnt feet to try and cool them down to ease the pain. Whilst awareness of the damage that exposure to the sun can cause has improved since then, much still needs to be done, with the incidence of melanoma continuing to increase here in the UK. Melanoma patient numbers being treated at the Marsden have doubled over the past 12 months alone.

As Shiona’s melanoma has progressed, I have learnt that it is an extremely unpredictable disease and once it metastasizes (spreads from its primary site), it can spread almost anywhere – commonly to the lungs, kidneys, liver, bones and/or brain – the reasons why melanoma spreads to different organs / parts of the body is not yet fully understood.

We both consider ourselves very fortunate that Shiona is being treated at the Royal Marsden and only last week, they announced that both their Chelsea and Sutton hospitals have been awarded ‘Outstanding’ by the Care Quality Commission. A fantastic achievement and recognition for everyone involved at the hospitals and from our experience, more than fully deserved.

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Not only do we live in close proximity to the hospitals, which makes our regular visits somewhat easier, we also have good relations with the melanoma team and trust them explicitly. Being a specialist cancer centre and being cared for under Professor Larkin and his team, who are at the forefront of research and clinical trials in melanoma for the treatment of advanced disease, we really couldn’t be in better hands. Having said that we are both acutely aware of how unpredictable the disease can be.

I am fortunate to have discovered that I have the ability for my mind to stay in the present; a stage 4 melanoma diagnosis has too many variables. As a consequence I’m a great believer in there being little benefit in wasting energy on things you cannot control. I am realistic and pragmatic enough to realize that I cannot control Shiona’s melanoma, however, what I can control or should I say influence (!) is my ability to support Shiona along the journey, so that has been my priority throughout.

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When I say influence … I have obviously had no influence over Shiona’s impending yoga weekend in Majorca with her friend Jen!

Notwithstanding the severity of the situation, we have had a few laughs along the way …

I have been sat in hospital waiting areas before whilst a nurse has been walking around asking for “David Ramage” … it normally takes a while for me to twig that the nurse is probably looking for me!

When Shiona updates the team about the next challenge for the Shomelanoma fundraising, I am often asked, somewhat sympathetically, “Are you having to do this too?”

My favourite was probably when Shiona was told she was being discharged from her 3 weeks stay in the Marsden Chelsea last summer to “save your husband from bankruptcy”.

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As many of you know I joined Shiona in abstaining from alcohol when she started her immunotherapy treatment and I completed a full year without an alcoholic drink in April this year. Many people asked whether I felt better for it … the reality was not noticeably! The real benefit for me was that I’m sure it helped keep me mentally on an even keel with so much going on.

Subsequently, the biggest thing I have noticed is the change in my drinking habits … I rarely have a drink at home now but still enjoy a glass or two when out.

My abstinence from drinking was however a source of amusement to our CNS (nurse) at the Marsden who loved to point me out to other patients (& their partners) in the waiting area telling them how I was so well behaved and always did as I was told albeit on at least one occasion, I was instructed to “have a drink David, you only live once!”

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Throughout it all, Shiona has maintained a remarkable, positive attitude. Of course there have been difficult moments but Shiona has shown tremendous resilience to dust herself down and get on with her life. She is not one for negativity. I am genuinely in awe of her.

I am also acutely aware that it is Shiona who has to deal with her diagnosis and try as I might, I can never fully put myself in her position and/or see things through her eyes. For example, if I think about scans … they are obviously a stressful time but whilst Shiona has to go through the whole worry of the scans, radiologists and results and no doubt must feel like time stops still, I don’t torture myself by over-thinking things that I have no control over.

On a couple of occasions this summer, Shiona has felt that things were not right with the odd pain causing her some anxiety. In such circumstances she monitors things for a few days and if still concerned will contact the team at the Marsden for either advice or a check-up. This has led to un-scheduled scans, which fortunately have been good. My approach to such scenarios is to stay calm and be logical. I was going to say rational but that could wrongly imply that Shiona has irrational thoughts … in her situation, no thoughts and/or anxieties could ever be described as irrational. It is only natural that such anxieties lead to thoughts about self-diagnosis and/or future treatment plans, however I refuse to indulge in such conversations preferring to wait and see what the facts are and/or what her Oncologist says. When I notice that Shiona is getting anxious about things, we will often go for a long walk to talk things through and take her mind off things.

We have been proactive in educating ourselves and understanding treatment options however this is tempered by the fact that many of the treatments are new and data is still being compiled and conclusions drawn. You also learn more as time goes by.

For example, when Shiona was recommended to have immunotherapy treatment on discovery of a small brain tumour in April 2017, we were thrust into a world that we knew little about. Statistics are bandied about in relation to treatment options and a scary new language is spoken with phrases such as ‘progression free survival’ and/or ‘overall survival’.

On the recommendation of her oncologist and after a few days to consider the options, Shiona opted for the combination immunotherapy treatment of ipilmumab and nivolumab, which apparently has an overall response rate of 58%, and which was comparatively better than if she had opted for single treatment with either nivolumab (44%) or ipilimumab (19%). These statistics are abstracted from the CheckMate 067 trial.

What I have subsequently learnt and now better understand is that the statistics quoted above were derived from clinical trials, and for which all trials have strict criteria to qualify to join in the first place, so in effect the results (& statistics) are to some extent, sanitized. For example, patients could not qualify for this particular trial if they had received prior treatment for their melanoma and/or in the case of patients like Shiona, melanoma that had spread to the brain were excluded from the trial. The sequence in which a patient receives treatment for their melanoma also affects the effectiveness of subsequent treatments.

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Back to the statistics, which suggested that some 39% of patients on the combination treatment suffered treatment related adverse effects leading to discontinuation of treatment. With the onset of her autoimmune hepatitis, Shiona joined the 39% club! Whilst in hospital we were advised that having such an adverse effect was considered a positive in terms of the overall response rate … increasing the likely response rate to the immunotherapy to c. 70%.

As you can probably tell, you can become inundated with statistics and in the end forget the context in which they apply. Statistics by their very nature are subjective and whilst medically and/or clinically of interest, for a patient &/or their families, I think you are better off not getting too obsessed about them.

At the time, both Shiona and I were being filmed for our story to potentially be included in a Channel 4 Documentary … with Shiona still in hospital, the producer came to interview me at home late one evening and said to me the statistics were looking good to which I answered along the lines of “It depends upon how you view statistics … for example, if I had ten members of my family and/or friends in a room, 70% means that 3 of them would not respond to treatment.” Statistics in the context of a serious illness and/or human life somehow seems inappropriate.

Recent developments in the treatment of melanoma (and many other forms of cancer) have recognized that the one size fits all approach doesn’t work. As Professor Larkin often remarks … “It’s all about the biology and every patient is different” and this is leading to more personalized treatment and care for patients.

I often say that the subject area is fascinating but I’d rather we were not exposed to it. Some 5-10 years ago, a patient with Stage 4 melanoma would have typically survived for between 6-9 months. Due to advances in the understanding and treatment of melanoma, this is not the case for a number of patients and the team at the Marsden are now able to study and monitor Stage 4 patients to gain further understanding of the disease and enhance/tailor individual treatments.

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Much of the current research surrounds trying to better understand immunotherapy and its effects. Immunotherapy treatment harnesses the body’s natural strength to fight cancer, empowering the immune system to conquer more types of cancer and save more lives.

It is a complex area especially when you consider that all patients will be unique in terms of:

  • pre-existing immune system/characteristics
  • tumour type / genetics
  • organ involvement
  • micro biome

By studying and monitoring patients throughout their treatment, they hope to be able to develop a panel of biomarkers that could identify patients at risk of immunotherapy toxicity before it occurs and be able to prevent it from occurring.

With immunotherapy being successful in the treatment of melanoma, it is now being applied to many other forms of cancer as an alternative to more traditional chemotherapy and radiotherapy treatments. Therefore the funds that we are raising through Shomelanoma will not only benefit further research in melanoma but also enhance the knowledge that can be applied to the treatment of many other forms of cancer.

Sunday 14th October 2018 will be our 13th wedding anniversary; rather than taking Shiona away, I will be undertaking my next challenge in the Shomelanoma fundraising, by running the Royal Parks Half Marathon again. Unlike last year, I will not have the novelty of achieving a personal best for each km I run. Joining me again will be one of my mates, Fraser Brock … we met each other back in July 1995 whilst both working together as graduates at Faithful & Gould in London … and when I asked him earlier this year if he fancied running again he responded in typical fashion “yes, delighted to help you guys” … what a top man!! If you would like to sponsor us, the link is below:

https://www.justgiving.com/fundraising/shomelanomarphm2018

As always, your support is greatly appreciated.

 

HUGE THANK YOU as Shomelanoma Fundraising exceeds £30K for Melanoma at the Royal Marsden

It’s been a glorious summer in London town made even better after the Shomelanoma team completed the Jurassic Coast 100km on one of the hottest weekends of the year over a tough course (you were so right Fred Edwards), which sent the fundraising spiraling over £30K. The Jurassic coast is truly stunning and we were sent on our way with a morning all from football manager Harry Redknapp who was queuing for breakfast at his local Sandbanks Café. The nudist beach at Studland provided further walking sights although unfortunately no David Beckham or David Gandy lookalikes that morning. It was a tough slog on a boiling hot weekend and due to blisters, vomiting and feeling delirious Colin, Tony and Phil  completed the full 100km with the rest of us finishing after 58km on day 1. Huge congratulations and thank you to all of the team Phil, David, Tony, Sam, Michelle and Colin, who took part, the support crew who were there smiling at the rest stops and everyone who has donated to all of the fundraising efforts it is massively appreciated.

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Just 2 days after the big walk it was hiking boots off and heels on for the glamorous Women’s Chapter Travel and Fashion event in aid of the Royal Marsden hosted by my amazing friend Michelle de Klerk who had also completed the Jurassic Coast walk. Tamara Lohan founder of Mr and Mrs Smith shared her experience on setting up a business and her top travel destinations and Stylist Deborah Sheridan-Taylor showed a capsule wardrobe, which was gorgeous. I said a few words about my melanoma journey and the fabulous work of the melanoma team at the Marsden and it was a hugely enjoyable evening. Huge thank you to Michelle and the wonderful Women’s Chapter.

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Over the summer, I have been trying to forget the melanoma, I still have the daily reminder with the numbness on the left of my mouth but in the grand scheme of things it’s minor and as long as it doesn’t affect my talking ability that’s fine. Following the Jurassic coast adventure, I set off for the French Alps with good friends Jen and Liz plus their kids. I was really excited about the trip as it felt good to be travelling out of the UK again (not something I had done since Corsica last year). I used to be going to an airport every other week with work but now I associate it with a special times and the fun of going on holiday.

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The French Alps trip was action packed and it was fabulous spending quality time with my 2 gorgeous best friends and their children Clem, Felicity, Imogen and Cameron. We loved hiking in the mountains, swimming, laughing, eating, and had lots of fun; melanoma went straight to the back of my mind. I was sad to leave France and once back in the UK over the next few days I started to become aware of a more frequent abdominal pain on my left side. After a week or so, with the if in doubt get it checked out mantra, I contacted my nurse at Marsden HQ and she arranged for me to go for a review with the doctor. After examining me, having blood tests and seeing that I was anxious he agreed to move forward my CT body scan. I felt relieved as the next scans were not due for another 3 weeks and I hadn’t had a body scan since early April. Fortunately the wait was short and the scan results were clear and I felt massively relieved.

Dave and I escaped off to Scotland for the August bank holiday and luckily it coincided with the next big fundraising challenge – Kirsteen’s Great Scottish Swim in Loch Lomond. Now for those of you who don’t know Scotland – Loch Lomond is the largest stretch of inland water in the UK just north of Glasgow. Its beautiful but swimming there is not for the faint hearted as its cold, deep and choppy definitely no bikinis required even after a heatwave summer it was wetsuits all the way. After the sat nav eventually got us to the right location via central Glasgow (who knew that there were two places called Balloch in Scotland!?) we arrived to see superstar Kirsteen successfully completing her swim. She did an amazing job, look as cool as a cucumber and was still smiling through her exhaustion as she got out of the water. Kirsteen was fundraising for Melanoma research at the Royal Marsden and also for Pancreatic Cancer UK in memory of her lovely father. We all spent the afternoon enjoying the Scottish sunshine and catching up over lunch. Congratulations to Kirsteen, thanks for all your amazing support.

 

During the time in Scotland I was again able to put melanoma to the back of my head. However as soon as I returned to London the MRI brain scan at Marsden HQ was looming ahead. I had my brain scan last week and had the weekend scanxiety wait before the clinic appointment with Dr Larkin on Monday. I felt calm but as we all know going in for scan results is like a game of roulette you just never know how the results are going to land. Fortunately today was good and 9 months on from starting targeted therapy Debrafenib and Trametinib (Dab/Tram) it continues to work its magic and it is currently effectively controlling my melanoma. My tumour has reduced in size and is now stable. As I have said previously the challenge is on average the melanoma develops resistance to the drugs after about a year, which is why it’s vital to continue supporting new research and drug trials to continue developing new treatment options for melanoma patients.

There are some exciting plans coming up for the Shomelanoma fundraising. Next up is the Royal Parks Half Marathon on October 14, Dave, Fraser and Sarah are signed up for this and Dave has even started training. A curry night will be organised soon to support the fundraising efforts.

https://www.justgiving.com/teams/shomelanoma

A new challenge is taking place north of the border when my gorgeous cousin Iain is taking things to another level with a sponsored waxathon. Let me just leave this to your imagination, it’s taking place on Nov 10 and more details will be coming soon.

A final word on upcoming challenges, I dreamt last night I was swimming the channel, when I woke up I was paddling hard and not moving fast. This told me (as did David) that NO, this would not be the next challenge. As Jen said to me today, I think you should stick to hiking and cycling…

As the hottest summer on record in the UK comes to a close please continue to protect your and your kiddies skin, don’t get burnt, wear your factor 50 in the UK and overseas and stay out the midday sun. Check your moles every month and if in doubt of any changes see your GP. Don’t join the statistics 7 people die of melanoma in the UK every day and once it spreads its very difficult to control. Sunbeds have been shown to contribute to rising cases of melanoma and we want them banned in the UK as they already are in Brazil and Australia. Melanoma UK  is leading the charge so please help save lives by signing and share the petition below.

https://petition.parliament.uk/petitions/223903

Stay tuned for the next installment of Shomelanoma, which will be a guest blog from my rockstar husband Dave.