Back To ‘Normal’ Life

Linda Huguelet |

Well, it’s 5:00 a.m. PT, although I keep telling myself that’s 8:00 a.m. ET, so it doesn’t seem so early. I’m at the San Diego airport waiting for my flight back home from the 2018 American Society of Hematology (ASH) annual meeting and exposition. It has been four, long, intense days of being totally immersed in multiple myeloma from before the sun came up to long after it set. Listening to the oral presentations, viewing posters, talking with exhibitors, and comparing notes with the other patients at the end of the day kept each day action packed. Now it’s time to get home, back to work, and let life get back to normal. All myeloma patients have a ‘new normal’ after their diagnosis and as they work through treatments and maintenance, but fortunately many are able to lead pretty normal lives for many years thanks to the continuous research.

Although this is not the case for all and that really struck me at ASH yesterday as I listened to multiple presentations about new approaches like CAR-T cell and BiTES. Each presentation includes the demographics of who participated in the trial. These are not just numbers; they are real patients fighting for their lives. Many participants in these trials have exhausted all available therapies and are hopeful that their trial will be the treatment that really works for them. Median age is one of the statistics that is always cited; the median is often late 50s or early 60s. And, they also include the age range and I was especially struck yesterday by a study whose youngest patient was only 27 years old. Other studies had patients in their early 30s. Some in our ASH group this year were diagnosed at these ages and are still successfully living with myeloma decades later, but by all means this is not the case for everyone.

This makes me so thankful for my situation – I’ve been living a relatively normal life since my diagnosis over 8 years ago at age 46. Except for during my stem cell transplant, I’ve been fortunate to continue my full-time work, volunteer activities, and all the things I would have likely been doing had I never joined the ‘myeloma club.’ I even have days that I don’t even think about myeloma. Although, I always want to be a prepared patient and know my next treatment move so it’s never too far from my mind.

Even though there were 939 abstracts about myeloma at ASH this year, I would classify this as a building year – no real blockbusters. These building blocks, which are hopefully future blockbusters, are very important and show how much activity and interest there is in bringing new treatments and a cure to myeloma patients. There were many updates and retrospective studies about front line therapies and maintenance which bore out the value of the existing standards of care and also offered some other alternatives to consider as more data becomes available. There was a lot of buzz about CAR-T cell therapies and BiTEs which look promising and offer the ever-needed new ways of attacking myeloma. However, the data from these studies includes small numbers of patients and the follow-up time is limited. I find the competition among the CAR-T cell therapies very exciting; each researcher and company associated with the trial are eager for ‘their’ CAR-T to be the one that works the best and gets the first Federal Drug Administration (FDA) approval. This competition is a huge benefit to patients.

Drs. Durie, Mateo and Mikhael had a terrific summary of this year’s conference on Monday night and you can view a replay on the International Myeloma Foundation’s (IMF) website by clicking  https://www.myeloma.org/videos/imwg-ash2018

Many thanks again to the IMF and all the sponsors that made my 6th visit to ASH possible. It’s such an honor to participate and to be able to pass along not only the highlights but also the hope that comes from this conference. Remember, Knowledge is Power, so stay informed and be an educated myeloma patient or caregiver. Also, take comfort in the fact that ‘normal’ for many researchers from around the globe is fighting everyday to find a cure for myeloma!

Linda Huguelet, Chattanooga Multiple Myeloma Networking Group

Follow me on Twitter @LindaMYELOMA

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