How Things Have Changed

Linda Huguelet |

I was diagnosed in 2010, and this is my seventh year to attend the American Society of Hematology (ASH) conference. As we are winding up the a last day of the conference, I can’t believe how much progress has been made. I know it’s never fast enough from a patient’s perspective, but nonetheless, the progress is amazing.

When I was first diagnosed, it was exciting when I heard talk about Pomalyst (pomalidomide). I was on Revlimid (lenolidamide), and doctors assured me there would be more options when needed. This was comforting, but at the same time, I remember my husband saying we also need more than refinements to existing therapies – we need new ways to attack the myeloma.

Now, almost 10 years later, the pipeline is full of new concepts and mechanisms to attack the myeloma cells. Not only are there new mechanisms, there is much more insight into how myeloma works and how to measure it.

Monoclonal antibodies came on the scene in late 2015, and no one has rested on their laurels with this success. Darzalex (daratumumab) and Emplicit (Elotuzumab) have helped many patients, including me, continue the fight against myeloma. Testing of combinations with these drugs to extend their use has been widely reported at ASH.

Now monoclonal antibodies are also components in antibody drug conjugates, BiTes, and more. These are focused on BCMA, which is expressed on 100% of myeloma cells, making it more targeted and effective. CAR T-cell therapy has been widely reported at this conference, and the refinements and increased knowledge since ASH 2018 is amazing. There is also a new immunomodulatory (IMiD) drug that works differently from those currently in use.

Thanks to the efforts of the International Myeloma Foundation (IMF) and its Black Swan Research Initiative, most myeloma clinical trials now incorporate minimal residual disease testing (MRD). This allows for more refined detection – it can be as sensitive as finding one myeloma cell in a million! MRD-testing expedites evaluation of trial results and is being refined so it can be used as routine screening for all patients. Mass spectrometry is also a new screening technique. It will allow for more sensitive blood testing that will provide valuable data to you and your doctors.

Many question the need and timing of an autologous stem cell transplant, but it is still considered the standard of care for newly diagnosed patients. The eligible age for a transplant continues to be stretched for fit older patients who want to consider this option.

Witnessing the commitment of the researchers and pharmaceutical companies at this conference is so reassuring. You feel the passion they possess for helping patients, and they always have their eye on a cure for myeloma! The advancements of treatments is very personal for me, my family, and all those whose lives are consumed by myeloma. New treatments and hopefully a cure is lives-changing!

Thanks to the IMF and the pharmaceutical sponsors that made this trip possible. I’m so excited to get home and begin sharing all of this progress with my support group and my community. Be sure check out all the support group leaders perspective from ASH at And be sure to register at for the Best of ASH 2019 webinar on January 9.

Linda Huguelet


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