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?
Is there anyone else your in family with MM?
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?
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.
- 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?
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