James Marvin's Blog

The aim of our ‘Elise for Life’ appeal is to raise £1m, to be split between Melanoma research and a new Melanoma Clinical Trials Unit.

Melanoma accounts for about 3 percent of skin cancer cases but causes the most skin cancer deaths. There is currently no cure for melanoma. The new Clinical Trials Unit is advancing this cure and is on the brink of something.

1 in 3 of us are affected by cancer. As many of you know this is something that affects me and my wife…

Esther was first diagnosed in 2005 with secondary Malignant Melanoma, having been misdiagnosed at aged 16. In the last 7 years, Esther’s illness has progressed to stage 4 and she has endured many major surgeries to remove tumours from her neck, lung and pelvis.

Unfortunately, for patients with advanced Melanoma there is no cure. But with more money and more research, a cure is imminent.

YOUR money will help current and future patients by providing better treatment, care and hope to so many people.

By kindly donating what you can, you could contribute to saving someone’s life.

WHAT HAVE YOU DONE TODAY TO MAKE YOU FEEL PROUD!?

Today, however, I want to tell you a little story. This story is about a young lady called Esther.

You will have noticed as you read the blog, that there is lots of talk about Elise’s appeal having been set up by her, to help other people who find themselves in a similar situation to her. That is exactly what it is designed to do. Furthermore, I often thank those of you that have supported us with your time, effort, and money, and tell you that you have helped a complete stranger, which is an amazing thing to do. Your money goes towards that stranger’s treatment, care, and support. It also enables The Christie to research new treatments and drugs to help that stranger.

Well now, I’m going to bring that stranger to life…..and tell you about Esther. This young lady is exactly why Elise did what she did, and why you do what you do. I hope as you read it, you are incredibly proud of what you have done, and continue to do. The fact is, there are many more Esther’s who need someone to do something to help them. That someone is us!

This is Esther Allen. She is 30. She’s married, and has a 2 year old little girl called Heidi. She also has Malignant Melanoma.

Her mum, Jane Henderson, sent me an email in August, and we’re now in regular contact. Her first email said this…..

‘Esther was diagnosed on 5th December 2005 and underwent a radical neck dissection to remove 3 tumours. Sadly she had been misdiagnosed aged 16 when a suspect mole was removed from her temple. In 2008 she had local recurrence in a lymph node, and 4 tumours removed from her right lung in February 2010. Six weeks ago she had a tumour removed from her right iliac crest. Because of Elise’s website I found and emailed Paul Lorigan (Elise’s oncologist) and he replied swiftly, suggesting that when Esther has a reccurrence that her TIL’s (tumour infiltrating lymphocytes) are harvested and frozen. This has greatly encouraged Esther. To have hope, is everything.’

‘Having trawled through 1077 clinical trials for melanoma on the WHO (World Health Organisation) website, and receiving information from Bethesda Maryland (Steven Rosenberg) it seems that American Citizens are desperately in a queue for the ACT (Adoptive Cell Therapy) trials and very unlikely that a UK citizen would be accepted. So Elise’s website has been my best find. I am so sorry that you lost your lovely wife Elise. Thanks to her for setting up this website and giving Esther something to cling to.’

Adoptive Cell Therapy research and trials is being carried out in Manchester at The Christie, in conjunction with Manchester University. It is this that the ‘research’ part of the money we raise is funding. The Christie is the ONLY place in the UK that carries out this work, and those who attended the reception evening after the China trek will have heard Professor Hawkins talking about this exciting development and work.

Last weeks email from Jane continues……

‘Without Elise’s appeal we would not have known of ACT at the Christie and knowing it is within our grasp means so much. Esther is NED – No Evidence of Disease – since the tumour from her hip was removed in June, and is doing well. We are on 3 monthly CT scans and the next one is after Xmas. In Paul Lorigan’s email to me in August after my enquiry he said that he knew our oncologist well, Sarah Danson, and that we were in good hands. He said should Esther run into further difficulties then he suggested harvesting her TIL’s and deep freezing them and then she would have to try drug therapy before ACT. He copied Sarah Danson into this email and she was delighted that I had found out about this. She didn’t know anything about this as it is not part of the NHS treatment she has available to offer. She has asked me to let her know of anything else I find out. But all of us want to win. Our brilliant doctors have their hands tied by standard limited treatment protocols. What you and Elise have done by supporting these new promising treatments and getting them off the ground is giving my daughter and people in her situation a true chance and a real hope. All I can say to both of you is thank you, thank you, thank you.

I also met a 40 year old father of 3 who is stage 4 with lung metastasis. He is very well informed on treatments and trials for melanoma worldwide and told me that he was hoping to go to the US to Steven Rosenberg in the New Year if he could get his company to fund it. He is Braf + (a defective gene) and is on a vemurafenib trial which has a positive response window of up to 18 months. He needs a plan B for when he stops responding. I told him about Paul Lorigan and ACT in Manchester and he was very surprised with all his contacts in this country and worldwide that there was something about to happen in Manchester that he knew nothing of. Because of Elise for life he is contacting Paul Lorigan and he will let me know the outcome soon.’

To finish, Jane went on to say…….

Esther’s husband bought her a recording session in Manchester for her 30th birthday because she never stops singing. In the house in the car etc. She has never done karaoke or sung in front of anyone and she’s not Barabra Streisand but she’s in tune and it’s very pleasant to listen to. We have made a few of these CD’s to raise money and are selling black wristbands that say HOPE and BEAT MELANOMA for £2 and have been raising money for Weston Park, Sheffield. We are now intending to split our charitable donations to support also the Adoptive Cell Therapy research at the Christie.

How fantastic is that?! I’ve asked Jane for some of the CD’s and wristbands, so we’ll be selling these soon…..I’ll put details on the site!

Now, I hope you are as proud as I am to read all of that?! What YOU and ELISE have done is to give not only Esther, but her husband, her daughter, her whole family, her friends, her colleagues….and others, like the 40 year old father of 3….hope! No matter how tough things are, they know that there are people like YOU out there doing everything you can to them a chance. THAT is what this is all about! Let me tell you, when you’re in that situation, that is all you want to know….that people are doing everything they can to help you. Esther is just like Elise….beautiful, full of life, brave, and determined. Elise would be the first to say ‘Esther is here, she’s very much alive, do all you can to help her, and others’!

So, Jane’s email has brought that ‘stranger’ to life.

Let’s continue doing what we’re doing, it clearly has such a positive effect on real people…people like Esther.

I’m going to finish by quoting Elise’s last blog entry…..

‘We are experiencing first hand how truly amazing The Christie is. No matter what the future holds, achieving our target will mean so much to so many people, you have no idea – please do it for me. Elise xxx’