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Stu's battle with Melanoma.

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Never in my wildest dreams did I ever think I would have to share my husbands fight with cancer and ask for support in saving his life, but I have to try as time is no longer on our side. Many of you know Stu (or Burb as many of his friends know him by) has been battling Stage 4 Melanoma after a reoccurrence 2 years ago. I am here to share his story and ask you to support his fight with cancer.

Not too long ago in April 2019 we were on holiday in Cornwall about to zip line over the Eden project. As we waited we was talking about our life together, our dream to travel the world, build our careers and buy a house as any young couple does. As we put the world too rights and made plans I noticed a large lump on the left side of Stu's neck. At the time, we brushed it off and agreed he would get it checked once we returned home. At the time Stu was travelling the world for work and unknown to us our world was about to change.


After the initial doctors appointment they thought it may be a cyst or a lymphoma. You know we loved watching Dr Pimple Popper. The doctor referred him to ENT and at a later date a biopsy would be taken to make sure. It had been a while and we didn't think much of it as we hadn't heard. Fast forward to 16th August 2019. A day neither of us will ever forget. As we had no reason to believe it was anything sinister, off I went to work and Stu went to his appointment before his flight to Mumbai and Kuala Lumpar the following day for work. I later got a call from Stu at work - "It's cancer". Our whole world changed in the matter of seconds. After the initial shock, Stu prepared himself for the next steps. His strength, determination and positive outlook on life continues to this day. Together, we would get through this.


The following week we went to see a specialist in London. Stu underwent many scans and tests to see if it was anywhere else in his body and to find out where the primary site was. Back and forth from London we went. He was diagnosed with Stage 3 Melanoma with an unknown primary. Only 3-9% of melanoma cases have unknown primary.

Lucky enough, the cancer was only showing in his lymph nodes and on September 16th 2019 Stu underwent a radical lymph node dissection. 28 lymph nodes removed but the melanoma had started to spread into his sternocleidomastoid and therefore a large section of the muscle was removed and BRAF mutation was detected. 4 days in hospital and two drains later and we was back home, with Stu thinking he could pop off the day after we returned home to Germany for Oktoberfest with the boys.



Despite many emotions Stu was determined to carry on living as normal as possible, a long recovery was ahead. Oktoberfest with the boys would have to wait to a later date. 9 weeks recovery from surgery and Stu was back at his desk. A MRI and PET-CT later showed no evidence of disease and as he had the BRAF gene he could start a years course of targeted drug therapy - Dabrafenib and Trametinib and would be monitored every 3 months. The side effects were manageable and we began to rebuild our lives as the world shut down for Covid.

Fast forward ...
December 2021 we moved into our house, our new chapter was about to start and the world had reopened. We welcomed our new addition to the family, a sassy Jack Russell called Nala and our family become 3. We spent the year spending time with family and friends, decorating our house and enjoying every moment possible as each scan came back clear. Despite a few scares along the way and benign tumours developing on his surgery site, Stu managed the daily pain and light was at the end of the tunnel.

Another year and no reoccurrence, we lived scan to scan and the anxiety finally started to ease.

March 2023, the usual PET-CT scan came around. 1 day after the scan we had a call to attend an appointment. Every time we underestimated the sheer destruction that melanoma causes not only for us, for all those fighting cancer and who have had experience with it. The melanoma had returned and multiple deposits were in Stu's liver and a tumour in his thigh. Stage 4. Despite the devastating news Stu was positive and I continued to admire the man in front of me and his strength to fight. Treatment for melanoma was advancing every day and he was started on first line treatment 06/04/2023 of Ipilimumab and Nivolumab a type of Immunotherapy that had promising results. His oncologist went through all the side effects, the list that never seemed to end. Stu managed 2 cycles, before experiencing increasing pain, nausea and fatigue but he continued to work through it all. We both did because life doesn't stop and bills had to be paid. However a visit to the hospital in June 2023 resulted in a month stay due to Grade 3 immune mediated hepatitis and his liver was going into failure. Every day his blood results showed an increase, 1st line treatment failed, 2nd line treatment failed but with hope in site and a liver biopsy later, 3rd line treatment started to work (a combination of Prednisolone, Mycophenolate and Tacrolimis). He was finally coming home and we got engaged in August 2023 for our 10 year anniversary. Stu also started a KETO diet as some research has shown that starving the cancer of sugar can stop progression. At this point we tried anything that may help.

After 2 months of weaning him off the medication, there was further progression. Instead of going back onto just Nivolumab, Stu's body needed to recover and the risk of it happening again was now increased. Therefore a decision was made to put him back onto Dabrafenib and Trametinib. January 2024 a PET-CT showed significant regression in the size of the liver metastases and thigh. Good news at last! There was a solitary site of disease progression and Stu underwent a radiofrequency ablation to get the active site under control. Basically burning the active disease. However we celebrated this hurdle as he continued his fight. A win no matter big or small, is always a win.

A PET-CT and MRI in May 2024 showed slow progression of the disease, Dabrafenib and Trametinib was no longer working and the cancer had started to build up immunity. We went to see a specialist in London for a second opinion. A new immunotherapy drug called Opdualag had been approved and was showing promising results. Stu decided alongside his professionals to commence Opdualag. Not once has he moaned, he took it for what it was and carried on as normal as much as he could despite the side effects. Stu always showed up on his worst days and never let the cancer take over our life. Unfortunately we received another blow, in October 2024 the cancer had started to spread and was now not only in his liver and thigh but also in his lung and left supraclavicular (lymph nodes). At around this time he stopped talking about it and we would deal whatever we needed to behind closed doors. He did not want to take all his friends and family on the rollarcoaster journey with him. He did not want to cause worry but wanted to enjoy his time with his friends and family and was still optimistic about the future.

Stu's only option was now clinical trials or chemotherapy. We continued to receive bad news after bad news. Due to his history he was often not a candidate for clinical trials or there wasn't a trial suitable for his case. However Stu was not going to sit around, he decided on starting chemotherapy early December. Chemotherapy for melanoma often has only 5-10% chance of working but we are taking those odds. We cancelled our wedding for 2026 and got married in a private ceremony on 30th December 2024. We ended the year, filled with love, family, friends, dancing and a relaxing spa break as we saw in the new year. Anyone who knows Stu knows he can put a smile on anyone's face and his laugh always fills a room.



2025 a new year but we continued the fight together! Stu's chemotherapy was for 3 days straight every 3 weeks. He started to lose his hair and slept a lot of time. His dedication to work continued, he kept his mind busy and took regular naps throughout the day. The more cycles Stu had the side effects were becoming increasingly worse, he developed anemia, often become confused and his oncology team were monitoring his bloods as he was at an increased risk of a blood clot but he made it so far to cycle 4 and we was awaiting a scan to see how the chemotherapy was doing.

Tuesday 11th March 2025 started off like a normal day, we both got ready for work and had our morning coffee together. Stu works from home so off he went to his office and I drove to work. I finished work around 6pm and came home. I found him in bed presenting stroke symptoms and he could not talk to me and was dipping in and out of consciousness, with facial drooping. I cannot begin to explain how either of us felt in that moment. I called an ambulance and he was rushed into hospital. The hospital found it was not a stroke but a large tumour on his left frontal lobe and a bleed. For the first time we couldn't talk to each other about what was going on, he was trapped in his own head and the devastation in his eyes will never leave me.

The bleed is now stable and steroids kept the inflammation down. However, as result he now was suffering from aphasia and affected his ability to express language. He understands everything but cannot not always find the words to communicate. But somehow we managed to communicate with each other using aids and gestures. A week later I brought him home and we learnt to navigate our current circumstances and we awaited to hear whether we can have brain surgery. Its heartbreaking how quickly things become 'normal' because this is our life but my god this is not normal for anyone going through cancer.



Stu's first 3 words since being home was "ready to fight" and since then he has undergone a craniotomy and the amazing NHS team have successfully removed the tumour and blood clot. As a result, he is able to talk again and currently recovering well at home. Unfortunately Stu's fight - our fight does not stop there. We no longer have any treatment options available in the UK other than going back onto targeted drug therapy with hope it continues to delay the cancer long enough for another treatment to become available. But the reality is time is currently not on our side and the current prognosis is heartbreaking.

Why we need your help:

We have found a treatment in the United States called TIL therapy that was FDA approved only recently. It is the first cancer treatment that uses immune cells called tumour-infiltrating lymphocytes (TILs) generated from a patients tumour to recognise and attack cancer cells. This is a one time treatment but it is intense and as a result Stu will spend time in hospital. He will undergo a procedure to surgically remove apart of the melanoma tumour so TIL cells can be grown in large numbers in a lab. Stu will then undergo chemotherapy to lower his immune system before the TIL cells are injected back into his body. After receiving the infusion he will be given immune-modulating treatment to help stimulate an immune response. Please see the links below for further information.


However it comes at a huge cost that we do not have and we are asking for help. We understand the world we live in and the many challenges all of us face but if you have anything to spare please donate and if you cannot then all I ask is you share Stu's story far and wide and raise awareness for all those facing and experiencing cancer.

Any proceeds that are not used to fund his treatment will be given to the NHS to support cancer patients, families and clinical treatment research. We have to try, we are holding onto hope.


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    Co-organizers (2)

    Stuart Smith
    Organizer
    England
    Lauren Smith
    Co-organizer

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