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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.

 

 

 

 

 

 

 

 

 

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Happy New Year – Goodbye 2018 A Year of Adventure

As 2018 comes to a close we will soon be welcoming a new year, I find myself feeling grateful that December has passed without the major dramas of the last 2 years. As my close friend Liz said to me last year I think you should press fast forward when you get to the month of December given that last year I discovered the new tumour in my brain and the year before the malignant lymph gland under my left arm plus pre cancer cells in my right breast. So this year I feel fortunate (and I am touching wood now) I have been able to enjoy a lovely December with family and friends that I have been cherishing to the max but being a stage 4 cancer patient I am only too aware how quickly things can change.

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I have been on a big high having just returned from the adventure of a lifetime to Argentina and Chile, which exceeded all expectations. After previous disappointments cancelling trips, I hadn’t dare get myself too excited about the holiday especially having been ill with a horrid virus just before leaving for Argentina. I honestly didn’t believe I would be going on the trip until I boarded the flight to Buenos Aires. It turned out to be a wonderful experience and I loved and treasured every moment of the holiday. As we were away for a month it gave me time to switch off and not think about melanoma and that mentally gave me a huge boost. I felt freedom that I hadn’t felt for a long time where no one knew me or anything about my health condition. It was a gorgeous action packed trip and there was never a dull moment. In fact it was so good that David said he needed another holiday on return to recover!!

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From the tango hot pot of Buenos Aires we travelled north to the incredible Iguazu Falls one of the wonders of the natural world, which blew us away. We then headed south to the beautiful lake district of northern Patagonia and had a week exploring there before heading to Southern Patagonia and the glacial national parks where we were stunned by the beauty of the Andes, which contrast with the cool blue of the glacial lakes. We spent 2 weeks there and over the border in Chile hiking on the most beautiful trails and were blessed with glorious weather. For me it was up there with the stunning Himalayas in Asia and just reinforced how much I love being in the mountains. Here are some of the highlights.

I was hugely relieved that the trip passed without any medical incidents. On the 5 hour overland trip from El Calafate to Torres del Paine we were with a lovely Australian couple and as we drove through the remote landscape that at times feels the end of the earth and arrived at Torres del Paine, Chile, Shirley remarked “you wouldn’t want to be having a medical emergency in this back of beyond location”. Before I left the UK, the doctor at the Marsden had told me we don’t want to be hearing from you until you get back so when I was tempted to send a message saying all was going well David reminded me not to tempt fate as I would press send and something would go wrong. When I returned to Marsden HQ after getting back from the trip all was good and I was ready to start celebrating the Xmas season with family and friends.

While we were away in Argentina the Shomelanoma fundraising for melanoma research at the Royal Marsden continued with full gusto. My gorgeous cousin Iain, his wife Siobhan and daughter Amanda pushed out all the stops and took things to a new level holding a WAXATHON fundraiser. Photos have been edited and the pain for my cousin and his friend Adam was all was all worth it as they raised over £4,000 which was just incredible and I have to say a huge thank you to all who also took part. Amanda’s employer Barclays kindly fund matched so a BIG thank you to them too and everyone who supported and donated.

 

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Meanwhile in Dubai my good friend Jane ran the Dubai half marathon raising more funds and Lyndsey Graham’s company undertook a second fundraising day in Glasgow. The High n Dry golf society of which my brother in law, Iain, was captain this year, have also donated £1k to the fund from their recent Marbella tour and I am delighted to say that once all the funds have been received the Shomelanoma fundraising total will be over £39k which is amazing news just 18 months after we began the fundraising. Next month I’ll provide a full update on the melanoma research projects at RMH that the money is helping to fund plus some of the upcoming fundraisers for 2019. If you would like to host or participate in your own challenge please let me know.

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

A massive thank you to everyone who has hosted participated and donated in all of the Shomelanoma fundraisers. They have been challenging, fun and most of all I have loved seeing all the smiles and laughter on everyone’s face as I look back through the photos of all the events.

As I look back on 2018 there have been huge highs and lows from the start of the year emergency trip to A ad E in Cornwall through to the fabulous holiday at the end of the year to Argentina which I never thought would happen. I continue to be immensely grateful for the wonderful care I receive from Professor Larkin, Nikki and all of the melanoma team at Marsden HQ plus the kickass drugs that are keeping me alive . I am also remembering all of those with melanoma and other cancers who have not made it to the end of the year and am acutely aware of how much still needs to be done both to prevent the continued rise of melanoma cases and also develop new drugs that will help more patients with advanced disease survive.

I am also aware of how quickly things can change and the ongoing mental challenge of living your life on a scan by scan basis. As I have mentioned before the drugs I am currently on work for an average of 12 months which of course is making me nervous in the lead up to the next scans as I have been on them for a year. I realize this is only natural.

For now wishing all family and friends a wonderful and healthy 2019, your kindness, messages and support mean everything and keep me going when times get tough. Here’s to more adventure and fun times in 2019.

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Home Sweet Home and Climbing More Mountains

The last month has seen adventure and holiday girl shomelanoma reappear which I know has been a welcome relief to both my husband David and also the Marsden Medical team (!) Last year after scaling Kilimanjaro (one of my lifetime best experiences), we signed up to Trek 8 Peaks in 48 Hours in the Lake District to raise funds for WellChild. At the time this seemed it would be a minor challenge compared to Kili and one that would be easily achieved. Little did I know that even taking part in the challenge let alone completing it would be a major personal achievement. Back in June while on my staycation in hospital, I didn’t even dare to think that I would be able to undertake the 8 Peaks in 48 Hours Lakes Challenge but it stayed in the back of my head as a goal and one I was determined to undertake.

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Training for the challenge commenced in July when we started getting back out on walks which I loved, it was so good to leave London where it felt that I had been trapped for what seemed like ages. When the medical form arrived for the challenge, I knew this would need discussion with my Oncologist. The next visit to the Marsden I told the team I was taking part in a challenge … “What challenge?” my Oncologist inquired and when I told him the details he asked if there would be any scrambling? No, I responded. He told me he wasn’t going to stop me taking part but did warn of the effects the steroids may have had on my joints and bones making them weaker and told me to take good care.

A trip to Scotland was planned for late August and it was so good to catch up with family, go to the Edinburgh festival and also get out in the hills to do a bit of hiking. It felt great to be out in the fresh air of the Scottish hills and we were blessed with beautiful weather as we scaled Ben Lawyers near Killin in the Trossachs. Only one year before we had climbed this munroe as part of our Kili training and had been unable to see much as it was snowing (and that was in May!) but what a difference a year made. I was feeling the effects of the steroids as my ankles were getting really swollen and I did feel my heart racing climbing up the mountain but as David told me his heart was also racing and it just meant taking a few more stops than normal. We had a wonderful day in the hills and I felt sad leaving Scotland on the return back south.

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During August, I continued to have weekly blood tests at the Marsden to monitor my liver ALT levels, which were now in the normal zone (below 40). The steroid weaning process was in progress and given I had started on such a high dosage 250mg it was going to take a while to get me off the drugs. I have been fortunate not to really suffer many side effects but by mid August I definitely felt I had the steroid moon face (albeit David and the girl squad reassured me that it was more a case of being ultra self-conscious and that it was barely noticeable) and I could feel weight shifting around my abdomen area, which made me feel a bit bloated. However, I was told by the team that given the level of steroids I had been on they were really surprised I hadn’t suffered more side effects and as David reminded me these drugs were necessary to get my liver levels stable again. On the plus side and I know the girls will like this the steroid puffy effect does iron out any wrinkles on your face and makes any ideas of botox or fillers unnecessary ha ha!   There is always a plus for every negative!

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September arrived and I felt excited about the month ahead. First up was the annual girly trip to Copenhagen with my two best girlfriends Jen and Liz. We do a girly weekend every year and these are always special times. In the past these have usually been to sun drenched locations with lots of vino, retail therapy and beach action. This year we had a change and were off to the Scandi style capital Copenhagen. Both Jen and Liz have been amazing friends to me over the years and this year even more, words can’t say how much I have appreciated them being there for me. When I was in hospital earlier in the summer I don’t think any of us thought the girly weekend would happen this year so it was a real bonus I was well enough to go. Copenhagen is a gorgeous city and we had lots of fun. There was no alcohol consumed for the first time ever on a girly weekend but that didn’t matter as we discovered non-alcoholic cocktails and still sat up chatting in restaurants until 2am with the bonus of waking up with clear heads. We were not blessed with good weather apart from the last day when we cycled round the city but that didn’t matter as we went exploring with the waterproofs on and did a bit of retail therapy. The Danes have got their priorities right in life, they are very relaxed, healthy and have some of the most amazing food in the world. We had a special fun weekend and are already onto planning the destination for 2018!

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Next up was the Lake District 8 Peaks in 48 Hours Challenge. Having taken part in these challenges over the last few years I knew I was definitely at my least fittest compared to previous years. I went to see my physio Des the day before setting off and told him I would be listening to my body and wouldn’t do anything daft. It wasn’t a race it was about completing the challenge. Friday morning dawned and we all set off to meet the rest of the group to start scaling the first mountain Hellvelyn (the first peak of 8). A number of the Kili team were also doing the challenge and it was so good to see them all and catch up. I started off in the front group but by the top of the Hellvelyn I knew that the pace they were walking at was going to be too quick so we moved into the second group. This felt much better as there were more breaks and I felt more comfortable. We climbed 3 Peaks on day one and day 2 scaled 5 Peaks including Scafell Pike. David and I had been up this mountain 2 years before as part of the 3 Peaks challenge and had seen nothing at 3 am in the morning in the pouring rain; it was fascinating to retrace the steps up Scafell Pike in the daylight. We were lucky to have clear views for the whole day and dry weather (a rare occurrence). I absolutely loved the 2nd day of climbing and a huge thank you must go to the WellChild safety team who look after us so amazingly well on these challenges. It is no mean feat getting 48 climbers of mixed fitness and ability safely up and down 8 mountains with no major injuries. I was feeling quite euphoric completing the challenge and on a real high, we celebrated with a becks blue at the local pub in Keswick and were already onto discussing the next mountain challenge, watch this space.

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David and I are now heading off to Corsica for a much-needed proper overseas holiday the first since my stage 4 melanoma diagnosis. I have had my picc line removed so that I can go swimming and more of the trip in the next blog.

I am now down to 20mg of steroids a day and when I get back from Corsica hopefully that will go down further assuming the liver ALT levels stay normal. Fingers crossed I will soon be off these drugs, get rid of the steroid puffy face and be feeling normal again with no major issues. I will be back to see my Oncologist on return from holiday and my next scans will be coming up next month.

I have learned and gained much support from the online support group melanoma-mates but this summer has been a sad time and there have been a number of members who have lost their lives to this vicious disease far too early and it is heartbreaking. It does further highlight how much more there is to do in finding a cure for advanced melanoma.

I am excited that we have a number of shomelanoma fundraising initiatives coming up in October and would love you to come and support them.

The shomelanoma team of David, Chris, Fraser and Fiona will all be running the Royal Parks Half Marathon in London on October 8 to raise funds for the melanoma team at the Royal Marsden.

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

On October 19, the amazing Jonny Awsum will be hosting a comedy fundraiser in aid of the melanoma team at the Royal Marsden. Full details here, please come along bring your friends and help us raise funds for a very special cause.

http://buytickets.at/jonnycomedyfundraiser/115668

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The no alcohol challenge continues and David has now reached day 168 (6 months on October 10) to support him reach day 200.

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

The date for the upcoming danceathon is to be confirmed, more coming in the next blog.

Thank you again for all your messages of support, they all keep me smiling. Stay tuned.

 

 

 

 

 

 

 

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Getting Normality Back To Life – What is the New Normal?

IMG_3153Following one of my recent visits to Marsden HQ, I began to think about one of the questions posed by my consultant when she asked “And what is the new normal for you Shiona, you’ve had a somewhat stormy year?” At that point, I realised visiting the Marsden two or three times a week had become the norm this summer but more worrying was the fact, I didn’t even question it.

Its been a couple of weeks since my last blog post and during that time I have been in steroid drug reduction mode getting myself weaned off my energy boosting drugs. This has been a slow process and one that I can only imagine in my head as similar to a withdrawal from cocaine. As of today, my liver ALT levels are now normal (36) for the first time since May and my steroid level has been reduced to 50mg/day. The medical team had warned me about the length of the weaning process in advance and fortunately my body has been able to withstand the relatively high steroid dosage without too many side effects, although I am now starting to get a bit of the attractive puffy moon face. Following a trip to the world athletics championships last week, I did get a bit of a wake up call and was feeling quite exhausted by the end of the day. Prior to my cancer diagnosis, I have never been one for taking a lot of medication and was very reluctant to pill pop unless absolutely necessary but that has all had to change … my initial daily dose was around 18 pills with my breakfast followed by another 6 pills before bed. Fortunately my morning steroid pills have steadily reduced from 10 to 4 pills, which is more bearableIMG_3135

I also decided it was time for a follow up to check what was going on with the pre-cancer cells in my right breast. Whilst this has always been much less of a risk than my melanoma it was still lingering in the background to be dealt with. A trip to the breast consultant was booked and following a positive meeting with my consultant the plan was to have a mammogram in 6 months and treat the breast cancer with tamoxifen (more tablets!).  At the request of the melanoma team this treatment will not start until the steroids have reduced further (as all tablet medications ultimately end up in the liver and they don’t want this to complicate my progress).

David did pose the question as to whether the immunotherapy treatment for the melanoma could have had any impact on the pre-cancerous breast cancer and once again the quote “We don’t know … you remain a very interesting and complex case for us “ came up. The reality is that the immunotherapy treatment I have had for my melanoma is so new we are still in the realms of the unknown if it will have had any impact on treating the pre-cancerous breast cancer cells.

Looking back I am so thankful that I didn’t go through with the mastectomy and reconstruction at the same time at the axillary lymph node clearance as I would have just been recovering from that surgery when the tumor was discovered in the brain which would have been pretty devastating for me.

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So that brings you up to speed on my current medical situation, now for the fun things, I am now in full holiday planning mode starting with a trip to the famous Edinburgh festival next week to take in some shows, visit my Scottish family plus climb a couple of munroes as part of the WellChild Trek the Lakes 8 Peaks in 48 hours training plan, which takes place in mid September.  Before the WellChild trek I am off to Copenhagen with Liz and Jen for our annual girly weekend, which will be followed by a much-needed holiday for both David and I to lovely Corsica. David has requested that we have a couple of days of R&R before I plan any stages walking of the famous GR20 whilst we are there!  Lets see …

I have also returned to do some work which has been a relief to get back to my marketing as that also brings normality plus it is my passion and its great to get back using my brain doing what I love.

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We are also in full steam ahead planning fund raising activities for the Melanoma team at the Royal Marsden. Coming up in the next couple of months, we have planned a comedy fundraiser on 19th October with the fabulous Jonny Awsum and Guests. We also have a shomelanoma team running the Royal Marathon Parks Half marathon on the 8th October. Huge thanks to David, Fraser, Chris, Fiona and Katie for volunteering to run. A date and venue for the Danceathon will also be coming soon

I am also getting myself back to full fitness and health, which has also been a welcome relief. My bike is in for a full service and will soon be back out on Richmond Park. Yoga and Pilates has resumed and walking training for the Lakes is full speed ahead. There is no doubt that having a strong positive mindset has been hugely important in the last few months. This feels good as it helps me feel I am in control.

Thank you again for all of your support and messages, they are hugely appreciated and I hope to see and catch up with you all very soon.

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Here is my god daughter Imogen, her sister Felicity, brother Cameron and cousins getting creative with their fundraising for shomelanoma in Scotland this week – ” guess the number of sweets in the jar ”  Well done team !

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