Coming full circle

| Linda Huguelet

I’m honored to have been invited by the International Myeloma Foundation (IMF) to attend the American Society of Hematology (ASH) Annual Meeting for the fourth year.  Since attending my first ASH, I’ve been continually amazed and encouraged by the vast amount of myeloma research that is being done. It’s truly inspiring to see research in action at ASH. Research is often thought of as a pretty dry subject, but in this case, it can truly be life-saving for me and all other myeloma patients. That makes it all very personal! The days at ASH are very long, usually starting at 7 a.m. and ending around 8 p.m. or later, but it’s so worth the time to be able to soak up all the latest information and excitement that surrounds myeloma research. I hope to be able to share some of this with you through my blogs and tweets throughout the conference.

I feel like things have come full circle for me this year. I’ve been keenly interested in and reported on monoclonal antibody treatments since my first ASH in 2012. At that time, these treatments were in their infancy and it seemed like their use outside of clinical trials was in the very distant future. Each year, more and more promising data was presented and then last year Darzalex® (daratumumab) and Empliciti® (elotuzumab) were approved just before our arrival at ASH. This created quite the buzz among the entire conference—everyone was talking about the advances in myeloma treatments!  I think those in other fields were envious of the strides that had been made.

This time last year, I was humming along nicely on Velcade® (bortezomib) maintenance—experiencing very few side effects and the bi-weekly shots were fitting easily into my full time work schedule. In fact, we reduced my maintenance dose a bit just after ASH since I’d been having success with this treatment for a year. Little did I know then that a monoclonal antibody treatment was just around the corner for me. We watched my protein and lambda numbers closely throughout the spring as they began to indicate that a change might be needed. By Memorial Day, my doctors and I discussed and agreed that Empliciti, along with Revlimid® (lenalidomide) and my best friend dexamethasone would be my next treatment option. We felt like I would still respond to Revlimid, so combining it with Empliciti seemed like the natural choice since it was the only monoclonal antibody approved in combination with Revlimid at the time.

To say the least, I was a bit anxious that I had become refractory to Velcade in the maintenance setting and that it was time to move on to another treatment regimen. But at the same time, I knew how well monoclonal antibodies had been working in clinical trials.  My fairly quick in and out visits to the clinic during my lunch hour have transitioned to spending half a day there. Thankfully, I have a supportive employer and I’m able to work remotely so I’m not forced to use vacation time for my treatments.  Each treatment day, which is now every other Wednesday, the nurses see me coming with my loaded backpack, laptop and study board (which is still around from my college days). I seek out a chair near a power outlet, set up my laptop on my study board and I begin working away as we wait for my lab results and infusions to begin. My work schedule is interrupted for about an hour for what I’ve named my “Benadryl nap,” but otherwise I don’t miss much. I can now predict pretty closely how long it takes before I begin to get a bit fuzzy from the Benadryl and should stop sending emails. So, depending on my workload that day, we decide if I start with Benadryl or fluids so that I can time my nap around what I need to accomplish that morning.

I’ve seen positive results from my treatment regimen with my M-protein holding at .2 and the side effects are very manageable. I really don’t notice any additional side effects than what I experienced in the past when I was on Revlimid only maintenance. The dex is always a bit challenging as far as my sleep goes, but luckily I don’t have a lot of the other side effects that I hear from so many patients.

As the ASH meeting approaches, I look forward to hearing more follow-up studies on the approved monoclonal antibodies as well as the new ones, like durvalumab and Keytruda® (pembrolizumab) that are emerging in clinical trials. I’ll also be listening keenly about maintenance treatment options, now more commonly known as continuous therapy.  Don’t forget to follow me on Twitter and check the IMF’s ASH website regularly so you can stay up-to-date on the most current information.  Remember, knowledge is power!

Leave a Reply


Linda Huguelet

Diagnosed with myeloma in 2010, Linda today co-leads the Chattanooga Multiple Myeloma Networking Group, alongside her husband. Linda will be attending the ASH Annual Meeting for the fourth time, and she will focus on maintenance therapy, updates on monoclonal antibodies approved in late 2015, and new emerging monoclonal antibody treatments.

Follow Linda on Twitter