Myeloma Mondays #5: Sid from Waitakere, New Zealand

I have had the good fortune to get to know Sid over the last few weeks through email. He's a great guy and I wish him well in his unfolding story that is taking place on the other side of the globe from me. The only person I know from New Zealand is a good runner friend of mine, Nick Willis, who is looking to take the gold medal in the 1500m at the 2012 Olympics in London after finishing 2nd in Beijing.

***Are you willing to share your MM story? If so, [click here]

Where were you born and raised?

• Hamilton, New Zealand

Where do you currently live?

• Waitakere, New Zealand

When were you diagnosed and how old were you?

• June 1st 2001, age 53.

Did you know what MM was prior to diagnosis?

• No

Is there anyone else your in family with MM?

• No

What led to your diagnosis?

• Fractured ribs, bone pain.

How many times were you referred before actually being diagnosed?

• Bone pain started 6 months prior to dx. I wasn't very pro-active.

Where have you received treatment?

• Auckland Hospital New Zealand.

Explain your treatment history:

• June 2001: Diagnosed with multiple myeloma stage III IgG kappa.
• June 2001: DVT right calf.
• June 2001 to September 2001: VAD.
• November 2001: Retinal vein thrombosis right eye. (Cleared)
• December 2001: Autologous stem cell transplant.

• March 2002: Interferon maintenance commences (3 years).

• April 2002: Plateau stage commences.
• March 2005: Retinal vein thrombosis left eye. (Cleared)
• September 2006: Plasmacytoma left humerus. Titanium rod prosthesis.

• January 2007 Thalidomide maintenance commences (14 months).
• November 2007: Relapse commenced. IgG rising, bone pain reappears.
• July 2008: Lytic lesion right humerus.
• August 2008: Second autologous stem cell transplant.
• October 2008: Titanium rod prosthesis right humerus.
• December 2008: Second plateau stage.
• June 2009: Second relapse commenced; IgG rising rapidly and 2 soft tissue plasmacytoma on skull, treatment cyclophosphamide and dexamethasone.
• October 2009: Third plateau stage.

• November 2009: 2 soft tissue plasmacytoma reappeared.

• January 2010: radiation to 2 soft tissue plasmacytomas.

Why did you or your doctor chose a specific treatment?

• Followed conventional treatment available in NZ at that time. Chemotherapy and possibly an ASCT, nothing else. We still do not have access to Velcade or Revlimid.

What has been the side effects of the different treatments?

• VAD: nausea
• ASCT: Nausea, diarrhea, mucositis, hair loss, dry skin, fatigue
• Interferon: depression
• Thalidomide: Peripheral neuropathy
• Radiation: Fatigue

What has been the hardest thing about your MM journey?

• Bone Pain

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Seek out other myelpma patients for information. (support group)
• Create your own myeloma support team.
• Create a myeloma and medical knowledge base.
• Maintain a positive attitude.

How have you been able to stay positive and encouraged in your MM journey?

• The unconditional love from my wife Myra.
• Maintaining a positive attitude.
• Walking away from negative people, negative stories.
• Support from my myeloma friends.
• Reading myeloma survivor stories.
• Taking ownership of my illness and creating "Team Sid" for support.

After being diagnosed... What perspective was changed the most?

• Spiritural. I became a reborn Christian. Why? One question. Death, what happens and where do I go when I die? Myeloma put that question in my face.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
No. I did live in a City that was the centre of an agricultural area.

What MM sites or blogs had you found good information from after diagnosis?
These are some of the many myeloma blogs I visit:

• Multiple myeloma for dummies. Phil Brabbs. What can I say?
• Beth’s myeloma blog. Beth Morgan. A myeloma blogger legend, blogging since 2003. Good historical information.
• Planet myeloma. Beth Morgan’s blog roll. A list of links to myeloma bloggers and a link to their latest posting updated hourly.
• Myeloma hope. Don, (Minnesota Don)Excellent information on Don’s treatment, lab tests and supplement regimen.
• Living with multiple myeloma. Pat Killingsworth. Daily postings (over 300) Pat comments on all myeloma matters giving the reader information to make their own decisions
• Beating myeloma blog. David Emerson, David advocates and uses alternative treatments.
• Nick’s myeloma blog. Nicolas van Dyk. Nik is finishing the newer aggressive approach to myeloma treatment. A must read.
• Myeloma Forums
• Myeloma Beacon

***To add your story to MM Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil