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Real Life Clinical Trial Experience from Myeloma Coach Howard Luehrs
Real Life Clinical Trial Experience from Myeloma Coach Howard Luehrs image
Real Life Clinical Trial Experience from Myeloma Coach Howard Luehrs
Posted Jun 02, 2021

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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The author Rozalynn Hite

about the author
Rozalynn Hite

Rozalynn Hite is the Myeloma Coach Director and wife of myeloma patient Richard Hite. Rozalynn is an occupational therapist and mother of three beautiful children.

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