Myeloma Mondays #10: Chuck from Tampa, FL

Where were you born and raised?

• All over the place. My father was in the Air Force. I was born in Enid Oklahoma. I lived in Florida, The Phillipines, Japan, Ohio, Indiana, New Jersey and Illinois all by the time I was 18. I call Illinois home.

Where do you currently live?

• Tampa, Florida

When were you diagnosed and how old were you?

• Diagnosed 11/19/2008 - age 46 - IgG Kappa

Did you know what MM was prior to diagnosis?

• Heck no!

Is there anyone else your in family with MM?

• No

What led to your diagnosis?

• broken clavical - disc golf

How many times were you referred before actually being diagnosed?

• 0

Where have you received treatment?

• Moffitt Cancer Center, Tampa, FL
• 11/??/2008 - clinical trial - CVDD (cyclophosphomide, Velcade, Doxil, Dexamethasone) + monthly zometa
• 3/2009: Completed 6 cycles of CVDD
• 6/2009: Autologous Stem Cell Transplant
  We achieved very good partial response and am on no maintenance therapy.
  Initial IgG - about 5900
  Initial M-spike - 3.9
  High Protein in Urine

  After Induction Therapy
  IgG -normal
  M-spike - 1.3
  High protein in Urine

  After SCT
  IgG - Normal
  M-spike .2
  Urine protein - normal
  Freelite ration - normal

  
  So, currently no maintenance therapy with the exception of Acyclovir 2x day.

  
  All numbers have been stable since transplant. When the numbers start rising again (by a factor of about 25%) my Doc will recommend to resume treatment.

  Right now, quarterly testing- Urine/serum/..

Why did you or your doctor choose a specific treatment?

• I believe in clinical trials. All the drugs in the trial are already approved for myeloma treatment. I'm relatively young and with two teenage boys, this combination is relatively well tolerated which would allow me to continue to work and care for my boys.

What has been the side effects of the different treatments?

• CVDD was well tolerated. I had no nausea, some fatigue, some hair loss. The Dexamethasone was not pleasant. I became irritibable and not too pleasant to be around when "crashing". But listen to my girlfriend and that's my normal nature! So, I don't know :) No issues with the Zometa.

What has been the hardest thing about your MM journey?

• It's hard to tell if the initial shock and discouraging results of initial internet searches regarding what to expect, was harder than living with this disease and never knowing if the next test will bring bad news.

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

1. Stay positive.
2. Don't believe everything you read.
3. Get involved. The International Myeloma Foundation, The Multiple Myeloma Reasearch Foundation, The Luekemia Lymphoma Society are great resources for all types of help.
4. Stay informed.
5. Question your Doctors about anything and everything until you are comfortable.

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

• Stick my head in the sand and pretend I don't have Multiple Myeloma! Now that's not too realistic, I know. Continue to work, raise my children, love my girlfriend, maintain hope that cure will become available while I'm still around to get it.

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

• Living with the knowledge that most likely I'll die earlier than I assumed.

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

• Yes. Cornfields as a teenager. I remember running behind the mosquito fogger (DDT I presume) as a child.

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

• MMforDummies, Nicks Myeloma Blog, Living with Multiple Myeloma, IMF, MMRF, LLS

***To add your story to Myeloma 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