Monday, March 1, 2010

Myeloma Mondays #4: David from Chagrin Falls, OH

Where were you born and raised?
  • Cleveland, Ohio
Where do you currently live?
  • Chagrin Falls, Ohio
When were you diagnosed and how old were you?
  • 2/14/94- age 34, non-secretory-
Did you know what MM was prior to diagnosis?
  • no
Is there anyone else your in family with MM?
  • not that I know of
What led to your diagnosis?
  • Broken fifth cervical vertibra
How many time were you referred before actually being diagnosed?
  • None
Where have you received treatment?
  • University Hospital of Cleveland and the Burzynski Research Clinic
Explain your treatment history
  • 3/95- five cycles of VAD
  • 9/95- 2 cycles of cytoxan
  • 12/95- pbsct
  • 10/96- local radiation
  • 9/97- second relapse-
  • 11/97- began antineoplaston therapy
  • 4/99- complete remission
Why did you or your doctor choose a specific treatment?
  • VAD, cytoxan, pbsct was considered standard, aggressive therapy at the time-
What has been the side effects of the different treatments?
  • extensive nerve damage, chemobrain, irritable bladder, GI problems-
What has been the hardest thing about your MM journey?
  • cancer diagnosis originally, side effects- I am okay now.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  • Life is all about priorities.
How have you been able to stay positive and encouraged in your MM journey?
  • Creating the Galen Foundation, launching beating-myeloma.org has been a tremendous help to me.
After being diagnosed... What perspective was changed the most?
  • My view of life has changed in that I have changed my priorities.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • I worked in a commercial printing plant.
What MM sites or blogs had you found good information from after diagnosis?
  • MMsupport, Margaret's Corner and beating-myeloma.org of course.
***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

5 comments:

Karen said...

Wow, 1994! That's amazing! I'm also amazed that you have found so many people diagnosed at such a young age. I'm planning to fill out my own survey sometime soon, I swear. :)

feresaknit said...

I saw something recently about a lady who'd had myeloma for 22 years, she had popped her clogs, but has to be forgiven for that since she was 83!

Phil Brabbs said...

Karen- I am going to hold you to that!

"popped her clogs" - that's a new phrase for me that I'll now never let go!

Liz said...

WOW! I said it once and I'll say it again, the exposure similarities before MM diagnosis is intriguing.
Humor me here Phil, once your FB fan page gets a significant following it would be interesting to set up an informal poll on this very subject. =)
Liz

Lori said...

I wanted to add that one of the ladies from our London and area support group was diagnosed in 1986 long before stem cell transplants and the meds that we have now. The first time I met her she looked at me and said "See, Myeloma is not a death sentence, live each day as it comes." She had had quite the journey and was continuing to live her life as fully as she could. She passed away in January 2010 from a cold that she could not shake, but I am sure that when she went, she went out dancing. There are several people that I know that are 11+ years. New drugs and new treatments are being discovered all the time.