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Myeloma Mondays #50: Deb from Hertfordshire, UK

Posted Apr 01 2013 12:00am
Where were you born and raised?
  • I was born in Sheffield but lived in Hertfordshire UK most of my life
Where do you currently live?
  • Hertfordshire, United Kingdom
When were you diagnosed and how old were you? 
  • 07/01/2009
Did you know what MM was prior to diagnosis?
  • Yes
Is there anyone else your in family with MM?
  • No
What led to your diagnosis?
  • Routine blood test
How many times were you referred before actually being diagnosed?
  • once
Where have you received treatment?
  • University College London Hospital  - MacMillan Cancer Centre
Explain your treatment history:
2009: MGUS diagnosed Paraproteins 4g/l by Haematologist at Local Hospital Lister Hospital, Stevenage UK 2010: Paraproteins 8g/l Skeletal survey clear no symptoms Oct 2011: Paraproteins 16g/l Bone Biopsy showed 8% cancerous cells July 2012 paraprotein at 28 g/L referral made too University College London Hospital UCLH Aug 2012  paraprotein at 35 g/L Smouldering Myeloma diagnosed Jan 2013  paraprotein at 50 g/L Multiple Myeloma Diagnosed Jan 3rd 2013 Bone Biopsy 80-90% cancerous cells found. Signed up to the PADIMAC trial. Jan 21st 2013 started chemo cycle 1 (21days) Feb11th 2013 Cycle 2 March 4th 2013 Cycle 3 March 11th Velcade injection put on hold due to Neuropathic pain in legs, arms and fingers. Why did you or your doctor choose a specific treatment?
  • As I had no symptoms I was eligible for the PADIMAC trial
What has been the side effects of the different treatments?
  • Neuropathic pain in legs, arms and fingers.
What has been the hardest thing about your MM journey?
  • Accepting a different way of life
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
    It's not as bad as you might first think.  People around you want to help. There is a lot of support and advice out there. Writing a blog has really helped me. It's important to live in the moment. Your life will change but some things will be for the better.
How have you been able to stay positive and encouraged in your MM journey? After being diagnosed... What perspective was changed the most?
  • How unimportant work is and how very important family and friends are. I found skills that I didn't know I had and I was stronger than I thought.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • No
What MM sites or blogs had you found good information from after diagnosis?
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