Monday, June 18, 2012

Multiple Myeloma Diagnosis... What's Next?

The multiple myeloma blog world we share is a reliable community of patients and caregivers who remember the moment the earth was drained of color upon hearing the words, "You have cancer."Every day new members enter our community, afraid, lost and unsure of what to do next.

Starting treatment in 2003, I remember thinking, "I have cancer coursing through my blood and I'm supposed to sit back and wait for the next appointment?" It gave me the creeps and I wanted action, every day,  to stop the mutant cells from establishing a foothold in my body. The wide ranging experience described by the narratives of patient and caregiver bloggers helped set expectations.

Diagnosed in January of 2003 and following aggressive treatment after each of three relapses, my stem cells were harvested in early 2009.  The disease seemed to drop to a smoldering level in reaction to the pre-harvest chemo, so the team decided to delay the transplant and continue monthly Zometa infusion while watching for plasma cell activity.

Over the last several months my kappa light chains have trended higher. At the same time I've been feeling more rib and back pain. A PT-scan on June 5 revealed new lesions, one on the right scapula the locus of intense pain.

During an appointment with 'my' oncologists, Dr. Robert Schlossman and NP Kim Noonan, at the Dana Farber on Thursday, the 14th, we discussed resumption of treatment using cycles of *RVD and a potential stem cell transplant in late August, early September. I had become skeptical of  the transplant process but after a thorough discussion of the alternatives with Dr. Schlossman, an *autologous procedure makes sense to me.

Moving into this next phase of mm treatment, I'll try to be consistent with updates in the hope my experience proves helpful.  MM has been a daily factor in my life for over nine years at this point and, though a roller coaster ride at times, I've been able to enjoy long stretches of virtually treatment free time with my family, friends and work mates. I intend to continue in much the same way.

*RVD = Revlimed + Velcade + Dexamethasone
*Autologous = Using the patient's stem cells as opposed to a donor's cells.


  1. It sounds as if you have come to a sense of peace with your disease... if that is possible. I hope everything goes well for you in the coming months.

    1. You're right, Elizabeth. Several proven treatments are available, the Dana Farber oncology team has been highly successful and I'm stubborn. I should add that I have strong support from friends, family and from this community where we watch out for each other.

      Thank you.