Real Life Clinical Trial Experience from Myeloma Coach Howard Luehrs

Hi. My name is Howard. I was diagnosed with smoldering multiple myeloma in May 2016. My myeloma became active in October 2018.  In between these dates I did a lot of research on myeloma treatments. The future appeared to be monoclonal antibodies. And I wanted one! They were not standard of care, however, so I would need to enroll in a clinical trial to have one as a treatment.

I used www.clinicaltrials.gov to search for a trial within driving distance. Now there are sites like SparkCures and TrialJectory that will do it for you (no charge). I ended up choosing a trial at the University of Chicago Medicine that was trialing Empliciti (elotuzumab), a monoclonal antibody that was unavailable to general patients then but can be used for standard treatment now.

Entering the trial meant meeting a bunch of health requirements, most of which had already been tested for. A few were special tests but were still covered by my insurance. Once I was approved for the trial, all my treatments, testing, and appointments had to be done at the University of Chicago Medicine, a 2 ½ hour drive one-way. This was the only drawback. All costs were covered either by the trial or by my insurance. I was getting the latest available treatments under the care of a multiple myeloma specialist (find a myeloma specialist here) and her multiple myeloma-experienced teams. Multiple myeloma is all they treat. I continue under their care today (although most of my treatments, tests, etc. are done locally).

After 4 cycles of treatment, everything pointed to a promising response…until the PET scan. It showed my disease was progressing and become non-secretory (no M-spike etc.). This excluded me from continued participation in the trial and still excludes me from current trials because of the nature of non-secretory myeloma. It has been proven that clinical trial participants have better outcomes than non-participants and I would gladly join another trial if I could.

Howard lives in northeast Indiana with his wife, Karen, and their dog Lucy. He is retired, having led a varied career as teacher, grist mill owner and state park naturalist. He currently spends his time gardening, baking, and walking Lucy.

Howard also shares his time volunteering as a Myeloma Coach where he shares what he has learned as well as the tools that have helped him with myeloma.  If you are a myeloma patient or caregiver consider becoming a Myeloma Coach! Your personal experience and support can truly make a difference.  Coaches commit to volunteering up to 8 hours a month. Training and ongoing education and support are provided.  

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