Monday, June 18, 2012

Myeloma Mondays #45: Tim from Geneva, IL (age 42)

Share your story on MM for Dummies!

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!
My name is Tim, I was diagnosed with Multiple Myeloma in Feb of 2011.  My wife and I live in Geneva. IL with our two daughters.

Where were you born and raised?

  •     Chatham, IL
Where do you currently live?
  •      Geneva, IL
When were you diagnosed and how old were you? 
  •       Feb 16, 2011 - 42 years old - Lambda Light Chain Myeloma
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? (example: broken vertebra)
  •     Anemia, first diagnosed as B12 deficiency.  Had B12 injections for 6 months with no response, referred to hematologist / oncologist who diagnosed me with Multiple Myeloma - High Risk d(13q), t(11:14).  No bone lesions.  80-90% Plasma cells in bone marrow biopsy.
How many times were you referred before actually being diagnosed?
  •      One
Where have you received treatment?
  •      La Grange Oncology - Geneva, IL
  •      Rush University Medical Center - Chicago, IL
Explain your treatment history:
  • 3/2011: started RVD
  • 6/2011: Completed 4 cycles of RVD with complete remission 
  • 7/2011: Autologous Transplant #1 (In Process)
Why did you or your doctor choose a specific treatment?
  •     Doctor stated with high risk Myeloma needed aggressive treatment.  Doctor stated based on my age and good health SCT is the best option for long term survival.  Induction along with SCT are currently the standard of treatment for Myeloma based on NCCN guidelines.
What has been the side effects of the different treatments?
  •     Dex has been the worst with hard time sleeping, then the crash.  I would average 4 hours of sleep on Mondays, the day I would take 40 mg of Dex.  On Wednesday and Thursday I would be tired and depressed.  Dex also gave me acid reflux and I would become hoarse a day after taking the Dex.   The doctor suggested taking Zantac on the day I take the Dex and for two days afterwards.  This helped with the acid reflux and hoarseness.
What has been the hardest thing about your MM journey?
  •     Telling my 10 and 15 year old daughters I was sick along with preparing for the worst, going over the will and life insurance policies.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  •     Don't read old information from the internet, there is great hope with new drugs.  Stick to reputable sites for research like MMRF and IMF.  Also keep track of your own test results, nobody cares more about your health than you.  Drink lots of water to keep your kidneys functioning.
How have you been able to stay positive and encouraged in your MM journey?  
  •      The first month was the toughest, felt like it was over.  After that I became much more positive.  I read the book The Anatomy of an illness perceived by the patient by Norman Cousins, this book helped me stay positive.  Positive energy itself has it's own healing powers.  My doctor at Rush helps me stay positive, he believes the novel therapies could be the cure.
  •    Have a good support team, you will need someone to bring you up when you are feeling down.  Talking about the disease to your support  team helps you cope.
After being diagnosed... What perspective was changed the most?
  •     Priorities in life and fear.  As the Tim McGraw song states Live Like You Are Dying.  Have no fear and do all those things you feared to do, even if you are cured do those things and never look back.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  •      Parents no, I used to do a lot of wood working and home projects, which included painting and staining.  I often wonder if epoxying my garage floor could have had anything to do with my Myeloma.  The epoxy chemicals were very strong, and looking at a series of blood test results, something occurred about the same time I epoxied my garage floor.
What MM sites or blogs had you found good information from after diagnosis?

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