UP FRONT
I had routine bloodwork done every year or so , and , until that summer , nothing had been out of the ordinary .
I remember the next few days vividly : Everything was normal , except my total protein ( which was always on the border between slightly elevated and high ), was higher than normal . I attempted to ignore it , thinking , “ Okay , I could be neurotic . A hematologist suspecting a hematologic malignancy based on one specific lab abnormality ? To a hammer , everything looks like a nail .”
As a hematologist , I ’ m aware that an elevated total protein count – particularly if it ’ s chronic and has turned progressive – could be a sign of myeloma or monoclonal gammopathy of undetermined significance . So , I reached out to my colleague Ola Landgren , MD , for his advice , and he suggested I follow up with serum free light chain and serum protein electrophoresis tests .
I remember that day very well : On August 21 , 2015 , the first tests came back from the lab and they were abnormal . They showed a substantial M spike and , even more ominous , nearly undetectable levels of immunoglobulin A and M . The serum free light chain values had an almost infinite kappalambda ratio . When I saw those results , I knew I had myeloma . The following Monday , August 24 , I had a bone marrow biopsy and a PET / CT scan that showed I had 70 percent malignant plasma cells in the marrow . It was , indeed , myeloma .
When the definitive diagnosis came in , I wasn ’ t shocked .
How did your wife and family react to the news ? Laurie and I have three sons who were 22 , 20 , and 17 years old at the time . When I shared everything that was going on , I tried to be calm and collected . I felt that if I broke down , my family would , too ; if I conveyed a sense of confidence , my family would , too . I used the same two-step strategy I use when talking with my patients and their families : First , I told everyone about my concerns ahead of time so that when the diagnosis did come in , they were more mentally prepared to hear it ; second , I presented it to them with hope and expectation . There ’ s a difference between saying , “ Your
“ People ask me if my diagnosis made me a better doctor [ or ] more sympathetic to my patients . My response is , ‘ I hope not .’”
dad has incurable cancer ,” and “ The cancer is incurable , but it ’ s controllable , and there are new , better treatments being developed .” I always want to give my patients hope and optimism , without being unrealistic . I did the same thing with my family . Laurie was sitting next to me when I was given the formal diagnosis , and as soon as she heard the news , I could see the wheels starting to turn . She has been wonderful and supportive during this experience . In addition to making sure I could eat meals and helping me get to appointments , she became a myeloma expert . She read articles about the latest myeloma research and the press releases from ASH , and she watched interviews with the leaders in the field . From all this work , she became so familiar with these names that once , when I told her that I had seen Brian Durie , MD ( the celebrated myeloma specialist and chair of the International Myeloma Foundation ) at a coffee shop when I was at the 2015 ASH Annual Meeting , she immediately texted me back , “ Go get a selfie with him !” To her , people like Dr . Durie and Kenneth Anderson , MD , are rock stars . I didn ’ t run after him to get one , but I am so appreciative of the time and effort she devoted to learning about myeloma .
I encouraged my sons to ask questions about what was going on and to maintain a normal life . When I was diagnosed , Aaron , my middle son , was going into his junior year of college and planning to spend his spring semester abroad . His first response was , “ I ’ ll cancel my semester abroad so I can be here if you
Dr . Soff and his wife , Laurie , on the first day home after his transplant .
need me .” It was very meaningful to me to hear him say that , but I told him what I needed most was for him and his brothers to go about their lives ; if things didn ’ t go well , I ’ d let them know . I have three great kids who have been as supportive as I could have asked for .
How has your life changed – both your career and your life outside of medicine – since your diagnosis ? People ask me if my diagnosis made me a better doctor – if it made me more sympathetic to my patients . My response is , “ I hope not .” I don ’ t have to drop a brick on my foot to realize that a person who comes in with a broken foot is in a lot of pain ; I hope that it didn ’ t take me developing myeloma at 59 years of age to be
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