Where were you born and raised?
- Detroit, MI
- Flint, MI
- December 2005, age 67, Plasma Cell Leukema, IGG
- Never heard of it.
- None. I was fortunate to have a fantastic internist who insisted on full body x-rays when my ribs still hurt after 6 weeks. MM showed up on the x-rays.
- University of Michigan, with supplemental support at Genesys/Hurley - Flint
- 1/2006: 4 day cycle VDT-PACE
- 2/2006: 2 cycles VDT
- 3/2006: 4 day cycle DT-PACE
- 4/2006: VDT
- 5/3/2006: Tandem transplant #1
- 6/2006: VDT
- 8/18/2006: Tandem transplant #2
- 9/2008-9 RVD cycles every 3 weeks
- 2010: Rev, Velcade, Dex and Cytoxan
Why did you or your doctor choose a specific treatment
- I had plasma cell leukemia, where the plasma cells migrate to the blood stream, a very rare and aggressive form of MM. Dr.J. called me to begin immediate and aggressive treatment the same evening he first saw me. An aggressive form called for aggressive treatment. I was in such a daze I don’t think I really understood what was happening. Fortunately he did. This form of MM had a very short prognosis, which I have long passed. Don’t believe any life line prognosis, everyone is different.
What has been the side effects of the different treatments?
- My first round of chemo caused a great deal of nausea, fatigue and hair loss. The second round was much easier without the nausea and less fatigue. My worst side effects are usually stomach problems and fatigue. Post transplant there was loss of appetite for a short time and extreme fatigue.
- Accepting that I can no longer do as much as I would like and having to pace myself accordingly and letting other people do things for me.
- Find a doctor you can trust and have faith in. If your doctor is not a myeloma specialist get a second opinion from one.
- Find a good support group.
- Realize your life will change but many good things will happen.
- Enjoy every moment you can.
How have you been able to stay positive and encouraged in your MM journey?
- The wonderful support of my husband, family and friends.
- Talking with other survivors who deal with the same issues and are positive.
- Founding a support group to help others.
After being diagnosed... What perspective was changed the most?
- The realization that life is short made me learn to appreciate every thing every day. Try to spend more time with the people I care about.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
- IMF and MM Research Consortium are very good reliable sites.
- The Acor list serve for myeloma tells personal stories and you can sometimes pick up interesting points but you have to be careful because these are not experts.
- I did not look at MM on the computer until after my second transplant and the tough stuff was behind.