***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story! -Phil
Where were you born and raised?
Short Hills, NJ
Where do you currently live?
West Orange, NJ
When were you diagnosed and how old were you?
Diagnosed March 1, 2010, age 48.
Did you know what MM was prior to diagnosis?
No, but knew anything ending in “oma” is bad.
Is there anyone else your in family with MM?
What led to your diagnosis?
Exhaustion, bloody noses, anemia.
How many times were you referred before actually being diagnosed?
Where have you received treatment?
Chemo: West Orange, NJ
Stem cell transplant and follow-up: Hackensack, NJ
Explain your treatment history:
3/20/10: Started RVD
6/9/10: Completed 4 cycles of RVD
7/27/10: Autologous stem cell transplant
12/9/10: Was told I'm in "stringent complete remission"!!!
Why did you or your doctor choose a specific treatment?
I’m young and healthy (except for MM), so I went for the transplant despite my fears.
What has been the side effects of the different treatments?
Dex was the hardest to take—made me feel like I was jumping out of my skin. Long hot baths, calming music, and yoga helped. Revlimid gave me a mild rash once, but it went away with cortisone cream and never came back. Velcade caused some burning/ tingling and cramping in my calves, which went away about 6 months after I stopped treatment.
During the transplant I was tired and nauseous. The diarrhea was a drag. So was the metallic taste in my mouth that made everything taste terrible. These things were all tough, but not excruciating—and they passed.
What has been the hardest thing about your MM journey?
Fear of the unknown.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
You are stronger than you know. This journey is hard, but bearable. The love and support of your family and friends will help pull you through.
Oh, and DON’T read all the scary statistics about MM—most of them are out of date and probably don’t apply to you.
How have you been able to stay positive and encouraged in your MM journey?
I try to surround myself with people, things, and activities that create positive energy. Exercising—even if it’s just a slow walk—is good for body and soul. When things are hard, I tell myself, “this too shall pass.” I laugh as much as I can.
After being diagnosed... What perspective was changed the most?
I try to live in the moment—the past is gone forever, the future is uncertain.
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 for Dummies has been SO inspiring and helpful! I dip in and out of many of the links on this blog. BMT Infonet was great for transplant info.