Finding The Diagnosis

I thought I was in close to perfect health at age 66 until one summer morning I woke up, tried to get out of bed, and “yikes”, I needed help. My Primary Care Provider (PCP) sent me off to physical therapy, but after 8 weeks, the physical therapist said, “You’re not making progress. I want you to see a hand surgeon and a rheumatologist.”  I went. The diagnosis was carpal tunnel AND tenosynovitis. The rheumatologist turned up MGUS. My multiple myeloma journey was underway.

My husband and I visited more doctors than we ever had before as we searched the web for myeloma information. The rheumatologist said he would call my PCP since she was the coordinator of my care, and that she would refer me to a hematologist to follow the MGUS.  I pursued the hand surgeon my physical therapist had recommended. My myeloma-related experiences in 2016 ran parallel to my hand surgery experiences. 

The hematologist ran a series of blood and urine tests, a skeletal scan, a PET scan, and a bone marrow test. The hematologist suggested that she follow me with a “watch and wait approach”. Meanwhile, my right hand caused me severe pain even after shots and therapy, so I scheduled DeQuervain’s tenosynovitis hand surgery for March 2016 and followed their regimen of occupational therapy. I was a slow healer, but took my cast off, at least part-time, after four months. Later, one doctor told me that hand surgery often precedes a multiple myeloma diagnosis.

Finding an Informed Doctor

My husband and I benefitted from our web searches soon after our myeloma tests and scans. We became uncertain that this general oncologist/hematologist knew how to read or explain the results, particularly the K/L ratio. Next, we reviewed myeloma medical research studies looking for names of myeloma experts in our area. The first research center we contacted during 2016 was two and a half hours away, but we made the journey for a second opinion. This doctor was excellent. He performed more tests, reviewed my CTs and X-rays, and explained so much to us but agreed with the “watch and wait” advice. We left with an appointment to return, but with a determination that 2016 would be the year we found our doctor, hopefully, someone closer to us.  At the end of 2016, we had an appointment only forty minutes away, canceled our local doctor’s appointment and left on a vacation. It was a helpful break.

We were both concerned that we had wasted a year, but as the world welcomed 2017, we felt that we had found our doctor. It took a little self-advocacy to become a regular patient of his. He had reviewed my records and also recommended watch and wait and thought we were there for a second opinion. I said, “I want to be your patient” and explained that was why we were there. He had me schedule MRI’s and CTs of some bones and new blood tests. A few days later, he called to say that he had found a lytic lesion in part of my shoulder and that my latest K/L, or in my case, L/K ratio was concerning. Treatment would begin now. The report showed that I was diagnosed with stage one or two multiple myeloma, depending upon the scale used.

Finding Treatments

Good news - I might qualify for a stem cell transplant despite being 67 years-old now, because I did not have other co-morbidities. My insurance company agreed. Shortly after, my doctor left the Center but I only felt abandoned for about a month since the new doctor was also well-informed and made me feel comfortable with the myeloma center I had chosen. I was now on a common path for a stem cell transplant.

The first step was induction therapy, the triplet, RVd (Revlimid, Velcade, dexamethasone).  I developed a “very angry rash” to Revlimid, and I began to get nervous because I felt I had failed and that I would end up being allergic to other options. So far, I have not, but my husband developed “an allergy” to the nastiness that dex can induce! 

I continued with Velcade alone and did show some reductions in my numbers as I prepared for the stem cell transplant. More blood tests and tests on my lungs and heart filled my days. Near the end of summer, my transplant grew closer. I donated cleaned-up blood to myself collected through apheresis and soon, the transplant took place. I was quite fatigued during my two-month recovery but traveled during Thanksgiving and did well, but felt pain in my joints.

I decided to enroll in physical therapy along with the shot of Velcade, my maintenance therapy which I took every other week. After 10 weeks of physical therapy, I had a solid series of exercises that helped considerably and which I continue to perform three times a week to this day, along with walking and riding my Schwinn Air Dyne on other days. Besides exercise, I also worked on nutrition, mainly reviewing my Comprehensive Metabolic Panel to see if I could make up for deficits in my electrolytes like potassium and sodium by adjusting my diet.

Web searches on these topics helped me determine which foods had the nutritional content I needed. For me, adding potassium helped me with energy as did the B12 shots my doctor prescribed. I also take part in complementary therapies, acupuncture and massage. All of these factors contribute to how I feel, very important support for living successfully with myeloma for five years so far.

After three and a half years on Velcade maintenance therapy, my myeloma relapsed and I have just begun treatment with Darzalex Faspro, another shot, which my recent blood tests show has been making a positive difference. So far, my journey has been more successful than I ever thought was possible.