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Melanoma Patients - MyMelanoma Research Project

AngieT
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MyMelanoma Research Project is a project that is being developed by Leeds University Research (my former) dermatologist, Prof Julia Newton Bishop, Oxford Oncologist Prof Mark Middleton and two melanoma patients, Sean Guinness & Imogen Cheese, the founder of the annual Melanoma Patient Conference.

The project is to effectively collect patients samples and data internationally to create the largest global cohort of Melanoma patients information over time.

The information collected will be used to drive forward research and help our scientists & experts better understand Melanoma & the lifestyle impacts upon our diagnosis, progression & survival chances.

We need the feedback of as many patients as possible at this time in order for the project to move from concept to reality with ethics & fundraising requiring a large number of patients opinions on the study & our aims.

If you are currently, or have been, a melanoma patient and would like to take part or to learn further information about the project, please email Imogen Cheese at imogen@melanomapatientconference.co.uk & she will happily help answer questions or provide additional information. 

As a melanoma patient over the last 24 years (Stage 1 in 1996 and then Stage 3 since 2009) I am taking part in this project so it will help melanoma patients in the future. I hope that you are as excited about the potential of this project as I am! I am really hoping that, with all your help, we can get well over the minimum 100 patients survey responses we need to move to the next stage!
Thank you

Angie x

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    Hi Angie

    My beloved husband had Stage 1 melanoma in 2010 and 3 months ago was diagnosed with Stage 4 - it having spread to his lungs, brain, intestine and various other places.  Following surgery to remove a couple of the tumours in his intestine which were causing a blockage, he was put on combination immunotherapy and finished the fourth and final dose last Monday.  We have the CT and MRI scans next week and continue with a single dose immunotherapy in six weeks for the remainder of the one or two years.  The early signs are encouraging - during my gentle daily massage of my husband, I have witnessed the complete disappearance of all the subcutaneous metastases and he has been very well in himself.  The last couple of weeks has seen the onset of diarhhoea which is proving difficult to shift and a loss of appetite and tiredness but we are working through that.  I'm not really sure why I felt compelled to write to you.  I was sitting here early in the morning and happened upon your post and just felt really encouraged and happy to hear how well you are doing and hope my dear husband, who is only 48 years old, will tread in your footsteps.  I have been reading a lot about how exercise helps to overcome the tiredness and he was being reasonably active around the house prior to the diarrhoea/tiredness but has been pretty much laid up these past few days.  Thank you for the work you are doing which is wonderful and I hope very much over time my husband will be happy to join in the project and I shall let you know about that.  Warm regards.

  • Offline in reply to Choshim

    Hi Choshim,

    Thank you for your kind words. I'm sorry to hear that your husband's melanoma has returned. It's good that the immunotherapy sounds to be working - his tiredness & diarrhoea are possibly side effects of the drugs. I will send you a friend request - if you accept it I can then send you a private message with some information that may help you with these problems. 

    Take care & best wishes,

    Angie

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    Hi. I am waiting on biopsy On a Scc or Melanoma. Should it come back as Melanoma then i will email you. I would like to know if anyone has reported the anon going numb and loosing all feeling in where the Melanoma is? Move is on my forehead and is about 2cm by 3cm and don't know how deep. So love more information. Cause this waiting is terrible. 

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    Hello Angie, 

    I know this was a long time ago but I was wondering if you know about anything I can get involved in as i've just been diagnosed with Stage 1 melanoma a few days ago and feel like I want to be doing something? 

    No worries if not!

    Cleo x

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