Myeloma Mondays #17: John from Windsor, Ontario, Canada

Where were you born and raised?

• Born in London, Ontario, Canada. Raised in Essex, Ontario (approx. 20 miles from Windsor, Ontario)

Where do you currently live?

• Windsor, Ontario - with my wife and 13 year old daughter

When were you diagnosed and how old were you?

• September 2009, I was 42 years old with IgA Kappa myeloma.

Did you know what MM was prior to diagnosis?

• I did not, but my wife had an idea.

Is there anyone else in your family with MM?

• No, and there has never been anyone with cancer

What lead to your diagnosis?

• July 2008 – hurt my back at work (I’m an elevator mechanic) seemed to get better, and then by Christmas 2008 I was having pain again. By the time my birthday came around in January 2009, I was having trouble walking and x-rays and CT scan showed a tumour at the 2^nd thoracic vertebrae. I was immediately booked for surgery.
• January 30, 2009, I had a laminectomy of this vertebrae to remove a plasmacytoma of the bone which had cracked the vertebrae in two spots. See below for the rest of the story.

How many times were you referred before actually being diagnosed?

• Hard to say the plasmacytoma was diagnosed right away, but they didn’t diagnose the MM until September 2009.

Where have you received treatment?

• Windsor, Ontario & London, Ontario

Explain your treatment history:

• 07/2008: hurt my back was given pain killers
• 01/2009: removal of bone plasmacytoma
• 02/2009: first visit to Cancer Centre for consult with radiation oncologist
• 03/2009: 20 radiation treatments begin
• 03/2009: met with Hematologist/oncologist for consult
• 04/2009: bone marrow biopsy – results showed IgA kappa light chains and proteins consistent with plasmacytoma – was told no treatment necessary and to come back in November, 2009.
• 07/2009 – baseline MRI of thoracic spine booked by radiation oncologist, there was nothing remarkable so come back in October.
• 07/2009: was having some rib pain, but attributed to being back at work full-time and doing more around the yard.
• 08/2009 – rib pain still present and my legs felt off – went for some x-rays & MRI of spine – there were more lesions on my spine in various spots.
• 08/2009 – appointment with hematologist and blood work – the doc didn’t think it was myeloma yet, but she wanted to be sure…well it was myeloma, and it wasn’t confirmed until September, with the kappa/lambda ratio being 17.92 (up from 4.56 in April), and the IgA protein was 9.88 (up from 2.2).
• 09/2009: started on pulse Dexamethasone 40mg for 4 days 3 x per month (was down to only 4 days per month in December and January, then stopped getting ready for transplant)
• 09/2009: started monthly Aredia treatments
• 10/2009: started Thalidomide 50mg daily (stopped mid February getting ready for autologous stem cell transplant)
• March 4/2009 – had IV catheter inserted in Windsor and started Neupogen injections
• March 8/2009 – harvesting of peripheral stem cells (London, ON) - collected enough the first day so no more Neupogen (Yeah!)
• March 15/2009 – admitted to hospital in London, ON for high dose Melphalan (will stay in hospital until it is safe for discharge)
• March 17/2009 – Day 0 – and I get my stem cells back (transplant)
• March 23/2009 – Day 6 and finally my WBC counts are ZERO
• March 28/2009 – counts are on the rise
• March 30/2009 – counts are high enough to be discharged (whole hospital stay was 2 weeks plus ½ a day)

Why did you or your doctor choose a specific treatment?

• Chose the above treatment because the doctor said “You are young and healthy (other than the myeloma), and you only have one of the CRAB criteria (bone involvement) so let’s be aggressive, and maybe you can stay in remission for a longer period, and there may be a cure if you relapse”. Just as a note I had achieved a complete remission by December on the Thalidomide and Dex.

What have been the side effects of the different treatments?

• Dexamethasone – weight gain and bloating
• Thalidomide – a little neuropathy
• Aredia – a little bone pain, but not too bad
• Neupogen – bone pain, but I was told by the aphaeresis nurse, that means it did it’s job.
• Melphalan – a lot of gastric upset and hair loss (I shaved my head)

What has been the hardest thing about your MM journey?

• Always having a black cloud over your head…when is this awful disease going to show its ugly face again.

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

• Educate yourself, be your own or have someone be an advocate, and don’t be afraid to ask questions, it’s your life.

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

• Good support from family and friends and just keeping in mind that you can’t cross a bridge until you get to it, so take one day at a time.

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

• Knowing your life can change at any moment, life is short

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• My mother’s family were all born and raised in farm country. I grew up in the same area (played in the ditches as a kid), and I have been exposed to different petroleum products in my work.

What MM sites or blogs had you found good information from after diagnosis?

• MMforDummies and the ones on the side of your page, and Myeloma Planet.

*Read other Myeloma Mondays by going here.

**To add your story to MM Mondays Story Time 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