Monday, July 23, 2012

Myeloma Mondays #46: Greg from Saranac Lake, NY

Where were you born and raised?  
  • Saranac Lake, NY
Where do you currently live? 
  • Castle Rock, CO
When were you diagnosed and how old were you? 
  • 12/18/2009 – IGA Lambda Light Chain MM
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? 
  • Tumor on my left hip
How many times were you referred before actually being diagnosed? 
  • First signs showed up in urinalysis, but family Dr. wasn’t sure what it was and didn’t push me to see anyone.  Turned out high # was a marker for MM.
  • Saw family Dr (1.5 yrs later for hip pain)  Xray revealed nothing
  • Went to PT for hip pain
    • 3 visits didn’t make it better
  • PT Sent me to Orthopedic guy – haPT Sent me to Orthopedic guy – had MRI
  • Then to oncologist high # was a marker for MM.

Where have you received treatment? 
  • Colorado Blood Cancer Instittute (CBCI, Denver, CO)
Explain your treatment history:
  • 12/18/2009:  Initial diagnosis
  • 01/2010: radiation of hip tumor
  • 01/2010 – 07/2010: Rev/Dex
  • 07/2010: cytoxin in prep for auto SCT and collection
  • 08/04/2010: Melphalan – Day-0, auto SCT begins
  • Short-term disability from work until 10/05/2010
  • Numbers begin to creep back up steadily over the next several months.  
  • 10/2010 thru 6/2011 – Back on Rev/Dex
  • 06/2011-09/2011: Rev/Dex/Velcade
    • Numbers come down to remission, go onto maintenanceat Velcade once/3wks, MM comes back strong and fast again.
  • 10/2011 thru 2/2012: Rev/Dex again w/ Velcade once a wk.
  • 02/2012 thru 6/2012: Thalomide w/ Velcade once/wk
    • Numbers climb fast in May/June…decision made to do tandem auto/allo SCT.
  • 07/16/2012: begin DT-PACE
    • Plan is to get numbers down with DT-Pace and go into Auto SCT after 2nd cycle in 2 months; followed with allo-SCT 60 days post Auto-SCT.

Why did you or your doctor choose a specific treatment ?

  • My Dr. is being aggressive with my treatment as I’m considered young (50 yr male) and historically have been in great shape.  Before MM I was consumed with cycling in my free time.

What has been the side effects of the different treatments?

  • Fatigue, GI issues top to bottom, brain focus on drugs, general anxiety.

What has been the hardest thing about your MM journey?

  • Uncertainty.  Fear to make long-term plans.

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

  • Continue to make long-term plans!  Plan to be around for a long time.
  • Surround yourself with your good friends and family.

How have you been able to stay positive and encouraged in your MM journey?
  • I know things could be worse.  I’m thankful for my 2 great kids, my family and friends.  I have an understanding employer, great insurance and found the time to be right for the nice sports-car I could never afford before.  Makes trips to/from the clinic more fun for sure.

After being diagnosed... What perspective was changed the most?
  • Life is short and unexpected things can come into your life.  Don’t squander today.  The Serenity Prayer puts things in perspective…don’t fuss over what has passed, but instead live in the NOW!

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?


Linda said...

Wow, Greg has been through alot and has much to endure in the coming months. He will be in our prayers as he takes these next steps and he is so very right...don't squander today. Thanks Phil for sharing his story.

Dr. Emily Schottman said...

Hi Greg from Saranac Lake! Your story came after a long day wondering why I'm trying so hard to make sense post stem cell transplant (11/2011...I am the Myeloma dummy from June 2012 ;) Your words about fear of making long term plans hit the nail on the head. In Austin, we're trying to bring comfort and healing to cancer survivors: Just wanted you to know we're rooting for you in Texas. If you'd like to email, I'm austineyedr at that gmail place.