“I’m Not Leaving”

Michael Tuohy |

In 2000 when I was diagnosed with multiple myeloma, I was informed that the life expectancy was 2-3 years. Being only 36 years with a young family, I feared my children (then ages 2 and 7) would not even remember me. Over the years, I’ve had many experiences of living with myeloma: some good, some challenging, but most importantly, I’m still here! 

Thanks to incredible progress in myeloma research, we now have over 11 treatments approved in the U.S. for myeloma. Each treatment gives us multiple possibilities in how it’s combined with other drugs and provides great hope for putting us into a nice long remission. 

For my last blog from ASH 2019, I wanted to wrap it up with what excited me most.  You’ve probably already been reading about BiSpecific T-cell Engagers (BiTEs).  If you want more info, here are a few links to help:

Cartoon Video on What is a BiTE

Celgene (now Bristol-Myers Squibb) presented new bispecific T-cell engager (TCE-CC-93269).  So what makes this different from other BiTEs? It has two arms that bind to the myeloma cell and one to the T-cell.  It is a two hour infusion on days 1, 8, 15, 22 for cycles 1-3.  For cycles 4-6, it’s only days 1 & 15 and for cycles 7 and beyond, it’s just day one. All in 28 day cycles.  This seems very promising with low toxicity and good results. Dr. Durie also discusses this in his “Takeaways from ASH 2019.”

Also interesting are all the trials on CAR T-cell therapy. You can read more on all the abstracts on the IMF’s ASH page, but here’s a video that helps to understand how it works:

For my last ASH 2019 blog, I’ll leave you with a special song. 

This time, one of my own.  I wrote this in 2002 when I was going for an autologus stem cell transplant.  Our children were young, and I wanted them, and my wife Robin, to know “I’m Not Leavin.” I hope this helps you to feel positive on your journey with myeloma too. 


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