Monday, April 8, 2013

Myeloma Mondays #51 - Kathy from Denver, CO


Share your story and encourage thousands! If you would like your story or 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? 

  • Born in Pocatello, ID.  Moved many, many times growing up -- Utah, Arizona, California and Colorado   

Where do you currently live? 

  • Denver, Colorado

When were you diagnosed?

  • January 2010 (age 60)

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? 

  • I had a rash (hives) on my legs whenever I would work out.  After seeing different doctors for 2-1/2 years, an allergist decided I needed more tests.  Not sure if she suspected multiple myeloma, but eventually it lead to a bone marrow biopsy and confirmed smoldering myeloma in November 2009.  My oncologist at the time said that it would be 18-24 months before I would exhibit signs and need treatment.  However, in 3 short months and more blood work, it had become very active, involving my kidneys and heart.  I started chemo right away (Velcade). 

How many times were you referred before actually diagnosed?

  • Several

Where have you received treatment? 

  • Originally with Kaiser Permanente in Denver.  Then I had to change insurance companies and went to Colorado Blood Cancer Institute (CBCI). That is where I am currently.

Explain Treatments:

  • Velcade for 4 months
  • stem cell transplant in August 2010
  • Revlimid for 1-1/2 years until side effects became too much 

Why did you or your doctor choose a specific treatment?

  • This was the protocol at both Kaiser Oncology and CBCI.  In one day, I was able to collect enough for two transplants, and because I was a very healthy and active individual, the doctors thought I would be a good patient for a transplant.

What has been the side effects of the different treatments?

  • Peripheral neuropathy in feet.  Intestinal issues with Revlimid, as well as a rash.  Fatigue, which still continues.

What has been the hardest thing about your MM journey?

  • It was very difficult accepting the diagnosis of an incurable blood cancer.  And telling my family about it was also very difficult.  Losing my job because I couldn't go back to work full-time was also very hard.  However, I was able to work part-time, and that eased the transition into retirement.

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 receive information from the IMF, so I am staying up to date on the current research.

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

  • A strong support system and faith in God.

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

  • It sounds trite, but each day is a blessing and I really appreciate the good days. 

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?

  • MM Beacon, IMF, several blogs - Pat Killingsworth, Pat's Cracked Cup, and U-tube.  Also there's an app for my I-pad called "Managing Myeloma" that keeps me up to date on what is happening in the myeloma community
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Share your story and encourage thousands! If you would like your story or 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!

Monday, April 1, 2013

Myeloma Mondays #50: Deb from Hertfordshire, UK

Where were you born and raised?
  • I was born in Sheffield but lived in Hertfordshire UK most of my life
Where do you currently live?
  • Hertfordshire, United Kingdom
When were you diagnosed and how old were you? 
  • 07/01/2009
Did you know what MM was prior to diagnosis?
  • Yes
Is there anyone else your in family with MM?
  • No
What led to your diagnosis?
  • Routine blood test
How many times were you referred before actually being diagnosed?
  • once
Where have you received treatment?
  • University College London Hospital  - MacMillan Cancer Centre
Explain your treatment history:
  • 2009: MGUS diagnosed Paraproteins 4g/l by Haematologist at Local Hospital Lister Hospital, Stevenage UK
  • 2010: Paraproteins 8g/l Skeletal survey clear no symptoms
  • Oct 2011: Paraproteins 16g/l Bone Biopsy showed 8% cancerous cells
  • July 2012 paraprotein at 28 g/L referral made too University College London Hospital UCLH
  • Aug 2012  paraprotein at 35 g/L Smouldering Myeloma diagnosed
  • Jan 2013  paraprotein at 50 g/L Multiple Myeloma Diagnosed
  • Jan 3rd 2013 Bone Biopsy 80-90% cancerous cells found. Signed up to the PADIMAC trial.
  • Jan 21st 2013 started chemo cycle 1 (21days)
  • Feb11th 2013 Cycle 2
  • March 4th 2013 Cycle 3
  • March 11th Velcade injection put on hold due to Neuropathic pain in legs, arms and fingers.
Why did you or your doctor choose a specific treatment?
  • As I had no symptoms I was eligible for the PADIMAC trial
What has been the side effects of the different treatments?
  • Neuropathic pain in legs, arms and fingers.
What has been the hardest thing about your MM journey?
  • Accepting a different way of life
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  • It's not as bad as you might first think. 
  • People around you want to help.
  • There is a lot of support and advice out there.
  • Writing a blog has really helped me.
  • It's important to live in the moment.
  • Your life will change but some things will be for the better.
How have you been able to stay positive and encouraged in your MM journey?
After being diagnosed... What perspective was changed the most?
  • How unimportant work is and how very important family and friends are. I found skills that I didn't know I had and I was stronger than I thought.
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?