Myeloma Mondays #8: Judy from Flint, MI

Where were you born and raised?

• Detroit, MI

Where do you currently live?

• Flint, MI

When were you diagnosed and how old were you?

• December 2005, age 67, Plasma Cell Leukema, IGG

Did you know what MM was prior to diagnosis?

• Never heard of it.

Is there anyone else your in family with MM?

• No

How many times were you referred before actually being diagnosed?

• 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.

Where have you received treatment?

• University of Michigan, with supplemental support at Genesys/Hurley - Flint

Explain your treatment history:

• 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.

What has been the hardest thing about your MM journey?

• 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.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• 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.
• Exercise.
• 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?

• No.

What MM sites or blogs had you found good information from after 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.

***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