***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!
Where were you born and raised?
Born in North Little Rock, Arkansas - lived there for 11 years. Moved to Millstadt, Illinois - lived there for 4 years. Moved to Jefferson, Maryland - lived there for 3 years. Attended college at the Univ. of South Alabama in Mobile, Alabama for 1 year, and then to the University of Maryland, College Park, Maryland for 4 years. Then lived around the DC/MD/VA area. Always seemed to live in new subdivisions built on the edge of farm fields and supplied by well water.
Where do you currently live?
Married and moved back to Middletown, Maryland. Same general area, Jefferson area, where I grew up.
When were you diagnosed and how old were you?
Diagnosed in April 2003 at the age of 39, at Stage IIIA, IgA kappa.
Did you know what MM was prior to diagnosis?
Had never heard of it.
Is there anyone else in your in family with MM?
Not that we know of.
What led to your diagnosis?
A year prior to diagnosis, I experienced extreme fatigue, shortness of breath, and extreme back pain. I eventually could not get out of bed. I had severe back spasms and ended up breaking 11 vertebrae in my back. I had to be taken out of my house by the volunteer firemen.
How many times were you referred before actually being diagnosed?
I was seen by many doctors. My primary doctors prescribed pain meds until I could see a specialist. The orthopedic doctors said I pulled a muscle in my back. The emergency room doctors said there was nothing wrong and that I had a low tolerance for pain!!! They also thought I was there for the drugs. I had to beg to be admitted, and approx. two weeks later my current oncologist figured it all out.
Where have you received treatment?
Our local hospital and The University of Arkansas for Medical Sciences, Myeloma Institute for Research and Therapy, Little Rock, Arkansas.
Explain your treatment history:
04/2003 - Local hospital - diagnosed. Started 1 cycle of VAD.
05/2003 - UAMS - Entered on Total Therapy II, non-Thalidomide arm; 4 cycles of chemo. and 2 stem cell collections. Had vertebraplasty on 11 spots on my back.
10/2003 - First Autologous Transplant with Melphalan 200 mg/m2.
02/2004 - Second Autologous Transplant with Melphalan 200 mg/m2. Complete remission.
Maintenance Therapy - a few drugs and vitamins and Zomata infusions for bone strengthening.
03/2009 - Out of remission; more chemo and another stem cell collection (just in case)
09/2009 - Complete remission again.
09/2009 - Started on Velcade, Revelimid and Dexamethasone - once a week infusion for 1-2 years
Why did you or your doctor choose a specific treatment?
UAMS claimed to have great responses from their treatments and they assured me they could help me. And I had Johns Hopkins tell me that their wasn't much that could be done!!!! So I said to UAMS, 'Lets do it!'
What has been the side effects of the different treatments?
Geez, every side effect you can imagine you pretty much will experience: fatigue, nauseau, headaches, backaches, diarrhea, constipation, neuropathy, confusion, forgetfulness, lack of smell & taste, depression, ummmmmm,,...should I go on.
What has been the hardest thing about your MM journey?
Seeing the fear in my daughter's eyes as she crawled into the hospital bed with me and seeing my husband cry. It was really difficult in the beginning because I was in pretty bad shape. I felt I had to hide a lot of the pain and pretend I felt better than I really did so my family wouldn't suffer.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
Learn, learn, learn. Know your disease and who will help you 'try' to beat it. It is going to be a very long haul and as far as I can see for right now, a forever haul. Your life has changed and it will always be this way until a cure is found. And don't get too tired of the pill popping; it is forever.
How have you been able to stay positive and encouraged in your MM journey?
It has been peaks and valleys. At first, especially before you go through much of the treatment, you're in survival mode. But after time passes, it all tends to get a little old and depressing at times. But, you do what you can, surround yourself with a great support system, and talk to your doctors and nurses about your troubles. They always have suggestions for you.
After being diagnosed... What perspective was changed the most?
My outlook on life. That it is too short and we all tend to live it in the past or future. It has taught me to live in the now and try to make the most of all my moments, good or bad.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
No, but I do believe where I grew up and lived might have had something to do with my diagnosis. We would always end up living in a new neighborhood built on the edge of farmland. And we always had wells for drinking water. So, maybe the chemical run-off from the fields into the well water triggered something in me!
What MM sites or blogs had you found good information from after diagnosis?
There wasn't much out there when I was diagnosed. The only thing I could do was Google MM and some medical based sites would show up. They were very gloomy and didn't have much helpful info. And everywhere I looked said I had about 5 years to live at the most. But now, if you Google MM, you'll find lots of private blogs by patients and they are not only helpful but they are also uplifting. I wish I would have had these blogs to read in my down moments in the beginning of my diagnosis!!!! Ex: Multiple Myeloma for Dummies, Lisa Ray, Managing Myeloma Life with Cancer, Nick's Myeloma Blog, Myeoma Planet, MM Support Beating Myeloma.org