Patient Stories – Myeloma Action Month

A Lot To Be Optimistic About

At 34 years old I was living a pretty incredible life. My wife and I had welcomed our second daughter in March of 2015. We were in the final months of construction on our new house and looking forward to soon calling it home. Yet something wasn’t quite right.

For close to a year I had been experiencing back and rib pain that kept me from enjoying everyday moments with our family. I attributed it to being an active father who was simply starting to show some age. But eventually I made the decision to get it checked out.

Following a series of scans, labs, and checkups we observed a lab result that was alarming, an incredibly high Kappa light chain number.

Shortly after, in October 2015, a bone marrow biopsy confirmed the diagnosis of Multiple Myeloma.

Our perfect little world was shaken to the core.

The compression fractures in my vertebrae led to almost unbearable pain. Fortunately, I was in front of a specialist within days and in a palliative care program that focused on returning me to a quality of life where I could once again thrive as a husband and father.

Approximately 20 weeks of chemo followed and an autologous stem cell transplant was performed in March of 2016. One year later life is good, but as anyone who knows this disease knows it’s far from “normal”.

We have a lot to be optimistic about given the progress being made in research around Myeloma. And for now we embrace each day with a unique perspective on life.

— Kent O., Hattiesburg, MS, USA

Spring 2011: My primary care physician (PCP) found elevated creatinine and protein in my urine. I was feeling fine at this “well check-up ” until these test results. Anxiety rose. I felt frantic. The nephrologist believed that I had interstitial nephritis, an inflammation of the kidneys. It resolved somewhat by itself but did not go away. Whew! August 2011: My PCP wisely ordered an SPEP…and bingo! I was diagnosed with MGUS, the precursor of multiple myeloma. I was referred to an excellent, local hematologist/oncologist.

Fall 2011: Lots of tests including the bone marrow biopsy, showing 33{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5} plasma cells. I brought my test results to a myeloma specialist at MD Anderson. I did not have any of the “CRAB criteria” or any deletions. Should I be treated? He ordered a test for amyloidosis, which turned out positive. I did not or do not have any signs of amyloidosis. I had active multiple myeloma. I began induction chemotherapy immediately.

With the Revlimid, dexamethasone, velcade treatment, I reached complete remission in 3-1/2 months. I collected and froze my stem cells for possible future use. Happily glowing and feeling well, I stayed in remission for about 4 years using maintenance chemotherapy. Spring 2016: My blood markers started to rise slowly and I reconsidered autogolous stem cell transplant (SCT).

Now I am a bit over one week away from SCT at MD Anderson. I feel excited and anxious. I am at peace with my decision and my husband is a wonderful caregiver. My specialist and my transplant team at MD Anderson are excellent and responsive to patients. I feel ready.

Many gifts have emerged on my myeloma journey. The love from my family and friends is overwhelming and joyful. I became an active member of the IMF (International Myeloma Foundation) That is my second family! With their help, I launched the first multiple myeloma support group in New Mexico. Starting with about 10 members, more than 30 people attend most of our monthly meetings.

My co-leader, John, is a wonderful asset for our group. Being a physician himself, he knows many answers. And we always have many questions. The people in my support group are caring, sharing and loving. They are truly exceptional and courageous survivors – another gift.

I have attended several IMF Patient and Family seminars, Leaders Summit meetings and Teleconferences. All of these have increased my knowledge and awareness about MM. As I give my time to these various pursuits, I realize that the gifts I receive are too numerous to count!

And finally the gift of today shines forth. I am living a full life with my spouse, my nearby children and grandchildren, my volunteer work and facilitating a few teacher workshops along the way. I feel blessed. As I go into this transplant, I know that it will be hard work. And I am confident that there will be more emergent gifts in my life.

— Susan B., Santa Fe, NM, USA