One month into 2022, 4 years on my current drug regime I was back onto the cancer treadmill with a bad case of Jan, Scanxiety. It is a new year and I was back at my second home Marsden HQ for my 3 monthly scans. The time seems to pass so quickly between scans, you have just passed go had some freedom some time to try and put the cancer to the back of your mind and it rears it’s ugly head. Don’t get me wrong, I am massively grateful to still be here 5 years on and the reason for that is due to the huge advances that have taken place in drug treatment for advanced melanoma, 10 years ago it is highly unlikely someone with my stage 4 melanoma would still be here. Sometimes, I just long for that freedom of life before cancer not being beholden to the ongoing worry of is the cancer growing again.
I was hoping for an uneventful scan visit and I had my blood tests first and then arrived for my scans. My veins are not great; 5 years of regular prodding and only being able to use the right arm, as I have no lymph nodes in my left arm doesn’t help matters. Anyway as they tried to cannulate me for the scans my veins would not play ball and it took 5 attempts to get the cannula in which made it quite stressful. Whilst this was happening there was an emergency inpatient case on a ventilator who needed an urgent scan whom I walked past and was clearly very ill. I am just not good in these situations and began to feel very queasy as if I was going to pass out. I think it just brought home how cancer is such an awful disease with the ability to destroy so many lives. Anyway I got myself together and the radiography staff are always amazing in helping keep you calm and I was able to get through my scans and get home. A few days later I was back the hospital to get my results and was delighted to hear that my scan results are good and I can continue to get on with living my life.
Of course as I am the two-cancer queen and whilst the melanoma has always presented the highest risk, the breast cancer also has to be managed. For the last year, I have been taking tamoxifen to control the breast cancer and that has worked in reducing the tumour that appeared in my right breast a year ago to the point where it now looks normal. I have been having 3 monthly ultrasounds to monitor this and on Thursday this week it was back to the Marsden for the latest ultrasound and also my annual mammogram. I sometimes have a nightmare that all of this time worrying about the melanoma, it will be the breast cancer that comes to haunt me and this was making me feel nervous for this week’s appointment. I had my mammogram first followed by the ultrasound and the radiographer told me that everything was looking good there was no evidence of the tumour and the tamoxifen was still working. I then saw my doctor and she confirmed that the scans and mammogram looked good and I didn’t need to go back to see her for 6 months. I left the hospital feeling happy and exhausted. The mental effects on dealing with living with cancer are very real and everyone deals with it differently, there is no right or wrong way, I definitely slept better on Thursday eve after receiving my results and feel hugely grateful to the incredible teams at the Marsden.
Back in early November, we were beyond delighted as the Team Shomelanoma Fundraising reached £75,000, which is fantastic news after Phil Hines and Adrian Baker completed 26 miles on the Thames Path. Both of them had been signed up earlier in the year to do the Giants Causeway but had got COVID so been unable to join us. Dave and I joined them for half of the walk and it was a gorgeous afternoon. A huge thank you to both of them and everyone who has joined the challenges and supported all of the fundraising activities, these have kept me going, created goals to work toward whilst creating a lot of special memories with wonderful family and friends so a heartfelt thank you to all of you.
In late November, I felt very excited to be invited back to the Francis Crick Institute in London to meet with Dr Ben Shum and Dr Samra Turajilic to discuss the latest updates on the melanoma research projects that the funding we have been raising is going towards. Dr Turajilic leads the Cancer Dynamics Laboratory at the Francis Crick Institute (https://www.crick.ac.uk/research/labs/samra-turajlic ) as well as working as a Medical Oncologist for the Melanoma and Renal team at The Royal Marsden with Professor Larkin. Dr Ben Shum is a Clinical Research Fellow at the Royal Marsden and currently undertaking melanoma research at The Crick Institute.
As you know, I have been fortunate to benefit from both immunotherapy and targeted therapy for my stage 4 melanoma. But 50% of stage 4 patients do not respond to immunotherapy and normally targeted therapy works on average for 12 months. (I am an outlier in that it has worked for 4 years), As such whilst there has been much progress made in treatments there is still so much more to extend and save more lives.
One particular area of unmet need is Uveal melanoma, which occurs when melanoma develops in the eye. It behaves very differently to skin melanoma and immunotherapy treatment does not work for the majority of patients. Some of you may recall our friend Robin passed away from Uveal melanoma 4 years ago after he had run out of treatment options so I was very excited to hear about this exciting new treatment for Uveal melanoma that the team had been involved in. Dr Shum provided the following research update :
There has been a newly published clinical trial for metastatic uveal melanoma for a treatment called tebentafusp, which has been the first treatment to improve survival in decades. This study included patients 378 patients who were HLA-A*02:01–positive (approximately 45% of persons in the United States and Europe) who did not previously receive any systemic therapy for metastatic uveal melanoma. The results show that on average, patients on tebentafusp survived for 21.7 months, compared with 16 months in those who had a different treatment.
This is a very exciting landmark step, because previously there was no standard treatment for metastatic uveal melanoma. This new treatment is in the process of being funded by the NHS, however early patient access programmes are now being set up. New clinical trials are also in the process of being set up to investigate the potential role of administering tebentafusp after resection of high risk uveal melanoma (in the adjuvant, rather than the metastatic setting).
The PEACE (Posthumous Evaluation of Adanced Cancer Environment) study is a post-mortem study of cancer patients who have kindly donated their bodies to cancer research. The generosity of these patients have provided us with a unique opportunity to investigate and understand more about all subtypes of metastatic melanoma. At post mortem, we sample many sites of disease, including many that would not be possible to sample during life. This allows us to investigate mechanisms of treatment response and resistance to treatments such as immunotherapy and targeted therapy.
The PEACE study includes 9 patients with metastatic uveal melanoma, and includes some patients who were enrolled in the tebentafusp clinical trial and benefitted from this new drug. In the lab, we are analysing how this drug might improve the immune system response to overcome uveal melanoma through sequencing the cancer genes and examining the tumours closely under the microscope. In particular, we are looking at how the tumour interacts with its microenvironment, of immune and other cells. We hypothesise that tebentafusp may be effective in bringing immune cells to the tumour cells, to help them recognise and overcome the tumour, and this effect may last beyond the duration of the treatment. We are also studying patients with other melanoma subtypes and are very excited to publish this research soon.
It was a wonderful afternoon and thank you to both Dr Turajilic and Dr Shum for spending the time with me. It really brings to life the wonderful research that is being done and how it then translates into the clinic to impact treatment of melanoma patients.
We are now planning the next fundraising challenges and there will be a full update in the next blog. If you would like to take part in your own fundraising challenge please get in touch and let me know.
Before Christmas I was finally able to have my 50th birthday celebrations with friends and family. It was a gorgeous evening and felt very special to have everyone together and see them in person after the last two years dominated by COVID. We also had a lovely family Xmas and New Year in Essex and Scotland.
After my recent scan results we also made it out to Chatel in France for a long weekend of skiing with gorgeous friends Jen and Paul, her sister Jill and Rick plus their Dad Norrie. We had so much fun, it felt amazing to be back in the snow covered mountains after 2 years and we belly ached with laughter, it was honestly one of the best weekends I have had in a very long time we loved every minute.
On that note, enjoy every day, live life to the max and check your skin regularly. Report any concerns to your GP or Dermatologist , early detection saves lives.
I’ll be back soon with more Shomelanoma adventures.
4 thoughts on “Staying Alive with Melanoma Research”
Yet another fantastic Report and, more importantly, yet another heart warming result!
As you rightly say Sho, the support of all the wonderful specialists and caring staff at the Royal Marsden has been exceptional ….. but of course there is another inspirational aspect to this amazing journey …… the very special Lass from Linlithgow!!!
With all our Love to you and Dave
Norrie and Irene
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Hi Norrie and Irene, It was such a relief to get good scan results and I feel very fortunate to be cared for by the amazing team at the Marsden. It was wonderful to hear about the progress being made with the melanoma research and I loved visiting The Crick Institute. It was also fantastic to spend the weekend skiing with you all, David and I had so much fun it was really wonderful. Looking forward to the next one. Lots of love to you both Shiona XX
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Hi Shiona… another inspirational report and so relieved to hear about your scan results… Martin moving back to the UK end of March and I hope that the 4 of us can get together in the summer finally… sending lots of love to you both, Paula and Martin x
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Hi Paula good to hear from you and hope you and Martin are doing well and the return to the UK is not too much of a shock. We would love to see you both so keep us posted on your timings and look forward to catching up in the summer, we are catching up with Jane and Carlos this weekend. Lots of love to you both Shiona X
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