Myeloma Mondays #16: John from Oregon

Where were you born and raised?

• I was born in San Francisco. I lived in California until I was 32.

Where do you currently live?

• Hood River, OR for the last 31 years.

When were you diagnosed and how old were you?

• 12/7/2007 – age 61, IGG Lambda. BMB showed 26% plasma cells, IGG was 6600+ with an M-Spike of 4.5

Did you know what MM was prior to diagnosis?

• No.

Is there anyone else your in family with MM?

• No.

What led to your diagnosis?

• Routine physical prompted by anemia, which was detected intermittently at Red Cross Blood Drives over the course of the two previous years.

How many times were you referred before actually being diagnosed?

• None, I received a definitive diagnosis within 10 days of the first blood test.

Where have you received treatment?

• Initial oral chemo prescribed by a local hematologist from Mid-Columbia Medical Center’s Celilo Oncology.
• Then, I went to the Seattle Cancer Care Alliance for a Stem Cell Transplant.

Explain your treatment history

• 01/2008: Started Thalidomide/Dexamethasone
• 06/2008: Completed 5 cycles of Thal/Dex
• 07/07/2008: Cytoxan, Etoposide, Dex – pre-transplant chemo
• 08/25-08/28/2008: High dose Melphalan -- Autologous Stem Cell Transplant
• 08/28/2008 – 03/2010: In remission without any treatment

Why did you or your doctor choose a specific treatment?

• My wife and I did our own research on treatments. Once I began the thal/dex, I asked for a referral to consult with the SCCA. I made the SCT decision independent of my local oncologist. The SCCA has an excellent reputation. I chose to do the SCT while still healthy.

What have been the side effects of the different treatments?

• Peripheral neuropathy from the thal/dex treatment continues to annoy me. I also experienced constipation, fatigue, and emotional ups and downs from these oral drugs.
• Nausea, diarrhea, joint pain, hair loss, chemo brain, fatigue, profound indifference plus aversion to food and drink, from the SCT. Most of this came and went within six weeks; the chemo brain still occurs intermittently.

What has been the hardest thing about your MM journey?

• It disrupted my wife’s and my life, but we rolled with it. For me, it has been an adventure. I am lucky to have no bone or kidney issues – yet.

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

• It is a process. Educate yourself about the disease. There are many good options for treatment. Don’t despair, the survival statistics trend in our favor due to incredibly dynamic research initiatives.

How have you been able to stay positive and encouraged in your MM journey?

• Educational resources such as the IMF, MMRF, and LLS are invaluable. In addition, I highly recommend joining a multiple myeloma support group. We are the real experts.

After being diagnosed... What perspective was changed the most?

• This confrontation with my mortality led me to discover deeper levels of tolerance for others and myself. I am at peace with the disease.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• My Dad was an automotive body and fender man. My Mom was a nurse.
• I’ve played golf all my life – a lot of golf. Also, I worked as a greens keeper for seven years.

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

· Jon Siegel’s Multiple Myeloma Blog was a thorough and positive recounting of his SCT. For whatever reason, it stopped abruptly.

· Beth’s Myeloma Blog does a good job of walking us through her SCT experience. She later facilitated everyone’s access to other bloggers with Planet Myeloma. For humor and social insight, Because I Said So; Margaret’s Corner for integrative and alternative medicine including cat therapy; for imaginative prose I like Lisa Ray; actually, I read them all. Everyone’s story fascinates me.

*Read other Myeloma Mondays by going here.

**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