What’s Your Next Move?

Linda Huguelet |

As the 60th Annual American Society of Hematology (ASH) meeting approaches, I’m thrilled to join the International Myeloma’s (IMF) team of patient representatives for the 6th time. Each year, I learn more and more and am ever encouraged by the continued passion shown by the researchers. Myeloma may be a rare cancer, but you’d never know it at ASH when you see all the research projects underway to bring new treatments and ultimately a cure.

When I first attended ASH, I was in remission after having a transplant in 2010, but I was anxious to learn about treatments under development because I knew that my remission wouldn’t last forever. A lot has changed for me since then and I’ve been through multiple treatment regimens  At every ASH I have paid special attention to monoclonal antibodies. I’ve seen them transition from clinical trials to approvals in 2015;  and I also have personal experience with both of the currently approved monoclonal antibodies –  Emplicti (elotuzumab) and Darzalex (daratumumab). I was treated successfully for almost 2 years with Empliciti and have now been on Darzalex since June.

My current regimen of Darzalex, Pomalyst (pomalidomide) and dex is supplemented by weekly Neupogen (filgrastrim) shots in order to keep my white count high enough to avoid any treatment interruptions. All is going well and it’s working as planned.  My hope is certainly that this continues for years to come. This regimen was my ‘plan B’ after Empliciti and now it’s time to select a new ‘plan B’ and even a ‘plan C’.  Myeloma is much like a game of chess or cards; you always want to be thinking ahead and know what your next move will be. As your myeloma journey evolves, the next moves may become a little less obvious which is why I’m a huge advocate of every patient having a true myeloma specialist on their team. In January, I will meet with my specialist, Dr. Sagar Lonial, to discuss my next moves and discuss how the things presented at ASH may be part of those moves. At diagnosis, treatment options are fairly cut and dry so you may not think you need a specialist, but I think that is the time to involve a specialist in order to develop a relationship and have a resource for your local hematologist to consult with. I know my local hematologist is pleased that Dr. Lonial is on our team and there are no egos involved when deferring to the expert.  If you’re like me and you don’t live in a major metropolitan area with a research hospital, you may have to travel a few hours to see a specialist, but it’s worth the time and effort.  Visits may only be once or twice a year.

It’s never too late to add a specialist to your team and my ASH colleagues, Yelak Biru and Jack Aiello, recorded a great video at last year’s ASH on why you should include a specialist on your team and they offer advice on how to select one.  Check it out at http://ash2017blogs.myeloma.org/patients-perspectives-biru-aiello/.

As I continue to follow monoclonal antibodies at ASH 2018, I’m adding BiTEs to my focus.  BiTEs are artificial bispecific monoclonal antibodies which go after two targets – one on the T cell and one on the cancer cell. The antibody directs a patient’s immune system (specifically the T cell) to link their T cells to the cancer cell, killing it. BiTEs are coming to clinical trials for myeloma patients and I can’t wait to learn more about them and share this and more with you through my ASH blogs and tweets.

Linda Huguelet, Chattanooga Multiple Myeloma Networking Group

@LindaMYELOMA

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