Imagine Moving Forward

| Linda Huguelet

I start every day before work with a 2.5 mile walk.  And, every day I look down at the IMF bracelet around my wrist that reads “Imagine Moving Forward.”   I’m so grateful for the advances in myeloma treatments that enable me to continue working and to lead a pretty active, normal lifestyle.

Since my diagnosis in 2010, I’ve been continually amazed and thankful for the tremendous ongoing research to improve the lives of myeloma patients.  After all, myeloma isn’t one of the well-known, “big” cancers. However, that doesn’t deter many, many researchers from dedicating their lives to finding a cure, improving our treatment options, and reducing side effects until there is a cure.

The American Society of Hematology (ASH) conference is the ultimate destination for learning the latest advances in myeloma research.  This will be my third year to attend. Each year, I’ve concentrated on learning more about the up-and-coming treatment options with monoclonal antibodies and the theories and options related to maintenance treatments.

Three years ago, monoclonal antibody treatments for myeloma were a fairly new focus and multiple trials were just beginning. All the drugs in the trials were referred to by their research names, which were a series of letters and numbers (for example, HuLus63). Naturally, these research names were difficult for me as a layperson to remember and keep straight.  Also, at that time, there was the hope that this category of drug could provide the same type of breakthrough results in myeloma that they have for other types of cancers.

This year, I’m expecting to hear more positive results from the clinical trials and Federal Drug Administration (FDA) approval of the now-named drugs.  Darzalex (daratumumab) received an earlier than expected approval in mid-November and the approval for elotuzumab is expected in the coming months.  Wow–that is moving forward!

The effectiveness of maintenance, now often referred to as continuous treatment, continues to be validated by trials and endorsed by most in the field.  When I attended my first ASH conference, I had discontinued Revlimid® (lenalidomide) maintenance because it was difficult for me to tolerate; and deep down, I hoped that I was one of those patients that could go many years without treatment.  I took comfort in hearing that some experts didn’t necessarily think that all low-risk patients required maintenance.  However, the difficulty, then and now, is how to best determine who might remain in remission without treatment.  That question is being addressed by the minimal residual disease (MRD) testing in the Black Swan Research Initiative®.  Other ASH bloggers and Dr. Durie will definitely give you more information about that!

My drug free-time lasted about 2 1/5 years before my relapse.  After returning to remission quickly; and now being classified as an intermediate risk patient with a 4:14 translocation, I’ve been on VELCADE® (bortezomib) subq maintenance for a year.  I’m tolerating this very well and plan to continue at least one more year or perhaps until a better option is available.  I’ll be listening closely at ASH this year for any new maintenance options—specifically, Ninlaro (ixazomib) trials, which may provide an oral proteasome inhibitor maintenance alternative.

The results of the ongoing research is part of the reason I’m able to keep moving forward—walking every day,  enjoying Tai Chi classes a few times a week, and weekly water aerobics.  My goal is to keep my body strong and fit so that I’m ready for the next treatment that I may need. And, more importantly, to keep me strong until a cure is found and life can truly return to normal.

Follow Linda on Twitter: @IMFlindaMYELOMA
Chattanooga Mulitple Myeloma Networking Group
Chattanooga, TN

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