Myeloma Mondays #52: Suzie from Washington DC

If you would like your story of that of a loved one posted on MM for Dummies, copy and paste the questions below in an email and send your response to me at phil at cancerkicker dot org. Thanks for your willingness to share your story for others to grow in their knowledge of Multiple Myeloma!

Where were you born and raised? 

  • Detroit, MI  

Where do you currently live? 

  • Washington, DC

When were you diagnosed?

  • September 2011

Did you know what MM was prior to diagnosis? 

  • No

Is there anyone else your in family with MM?

  • Yes, my father

What led to your diagnosis? 

  • Annual physical showed elevated total protein in blood.

How many times were you referred before actually diagnosed?

  • Once from my internal medicine physician who dx’d MGUS to oncologist who did bone marrow and dx’d MM

Where have you received treatment? 

  • NIH

Explain Treatments:

  • Carfilzomib along with lenalidomide and dex for 8 months
  • lenalidomide 10mg continuous treatment since April 2012
  • bisphosphonates

Why did you or your doctor choose a specific treatment?

  • I entered a clinical trial for newly diagnosed multiple myeloma patients with carfilzomib because I knew it did not have peripheral neuropathy like what was seen with bortezomib.

What has been the side effects of the different treatments?

  • The biggest one was fatigue along with phlebitis while receiving carfilzomib. During continuous treatment I have had joint aches and diarrhea.

What has been the hardest thing about your MM journey?

  • Moving forward with the certainty of death by accepting that it was always certain but unfocused on. Recognizing that I could have died any day in a car crash or stepping off a curb, but I did not focus on dying even though it was certain. Knowing, I will likely not know my sons wives nor their children.

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

  • Be an active participant with your team of doctors.  I read blogs and research so that I can be an informed patient. Unfortunately, receiving the best care means you need to know your choices. You still will receive good care. It just may not be the best for you as an individual patient, unless you are informed and know your preferences especially in terms of quality of life.

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

  •  Faith in God. Reading lots of Joel Osteen.

After being diagnosed… What perspective was changed the most?

  • Accepting that Life is transient and knowing that we are not human beings having a spiritual experience on earth but rather spiritual beings having a human experience on earth 

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

  • Yes. I suspect it is soil or fish related (environmental). Toxins in soil from a farm or in fish from the Great Lakes.

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

  • IMF,Clinical Care Options, MMRF, Blood Journal,  Medscape, MyelomaBeacon, Webinars from ASH & ASCO, Pat Killingsworth’s book Liviing With Multiple Myeloma 

Learn more about Suzie’s Story here: