The following journey is another one that I hold very close to my heart. This is the story told by Kevin's wife who has been the caretaker through this experience. Kevin was diagnosed at 25 and is now over four years out and still in remission. Thanks to modern science they now have a beautiful son!
Where were you born and raised?
- Reynolds, Indiana
Where do you currently live?
- West Lafayette, Indiana
- August 2005, 25 years old
Did you know what MM was prior to diagnosis?
- No and neither did my PhD, Cancer Biologist Wife
Is there anyone else your in family with MM?
- Not that we know of
What led to your diagnosis?
- Broken lumbar vertebra
How many times were you referred before actually being diagnosed?
- None, the neurosurgeon removed tissue from the vertebra and was diagnosed a couple of days later. Our current doctor also did a hip biopsy to confirm multiple myeloma not a plasmacytoma (myeloma in one site).
Where have you received treatment?
- Indiana University Hospital/IU cancer center (Indianapolis, Indiana)
Explain your treatment history:
- 10/2005: Started Dex and Zometa once a month (for a good 2 years)
- 11/2005: Dex/Thalidomide (Revalmid and velcade were still in clinical trials)
- 4/2006: Finished 3rd round of Dex/Thalidomide
- 5/2006: Autologous Transplant #1
- 5/2006-current only taking zometa (4 mg) every three months. In remission since transplant.
Why did you or your doctor choose a specific treatment ?
- At the time, it was the standard of care and in my mind (cancer biologist wife) the best treatment option. Loved and trusted the physician. Would have done a tandem transplant had his sister been a match.
What has been the side effects of the different treatments?
- Zometa made him flu like for the first few times he got it. He then started to take the entire bag of saline that they also administer with the zometa and has zero problems since. This was recomended by one of the nurse at the infusion center.
- Dex made him gain 40 pounds in 4 months. The transplant went about as smoothly as possible. In hospital for 13 days!!!
What has been the hardest thing about your MM journey?
- Just the fact that at 25 he isn't suppose to have this disease!!! Also, being married for 1 year, about the start a family and then having to put our lives on hold for a year. Then having to use IVF to have children was hard.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
- Do your research and find a physician you trust. Our first doctor sucked!
How have you been able to stay positive and encouraged in your MM journey?
- As a caretaker, remembering that it is okay to be pissed/sad/frustrated etc. content sometimes. You don't always have to be happy. The negative thoughts will creep in but trying to look on the brighter side of life helps. Also, live each day like you won't have another (or something in that realm)
After being diagnosed... What perspective was changed the most?
- Life is short, live it well
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
- My husband lived on a farm that was sprayed with insecticides and his mom lived on a farm growing up.
What MM sites or blogs had you found good information from after diagnosis?
- MMForDummies and Nick's myeloma blog have been interesting to read. The treatment for myeloma has changed even in the last 4 years.
***To add your story to MM Mondays Story Time 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