I explained to my daughter that I was going to a blood convention.
Saturday, December 5, 2015
The Orange County Convention Center is the longest building I have ever hiked. Envision airline terminals. My new SGL (“Support Group Leaders”) friends joke about leashing ourselves together, though no one has yet gotten lost (including me). We shuttle-bused together to the 6 a.m. IMWG presentation on Saturday. Weak coffee. Really weak coffee. I mean really, really weak coffee. The rock stars of myeloma entered; I perked up as the wonderful Dr. Durie and Dr. Rajkumar and several other physicians spoke meaningfully and passionately about their work. How to use these new medications is the challenge for clinicians (for example, dosage; how many cycles; in what combination with other meds; when to use these drugs in the course of the disease; and for whom are these drugs appropriate, depending on other health factors).
After a few hours at ASH, I see that myeloma is dominant this year. The daily newspaper produced by ASH had “Myeloma” splashed across the front page one day.
To begin, I sponged it all up at the SWOG trial that Dr. Durie led. What do our group members need to know? Not necessarily the statistics that fly by on the slides. Many people, including the doctors, madly photograph the conclusion slide as the presentations go really fast. One of the most important points from the SWOG trial was the discussion of the additional efficacy of adding VELCADE® to the Revlimid®/dexamethasone (dex) combination.
Later that Saturday evening . . .
Watching docs from dozens of countries at the evening awards reception, I spot some who seem rather uncomfortable; and so, I begin to engage them. As I love meeting people from other countries, I scope the scene and introduce myself to a Spanish doctor who struggles to speak English. Her intelligence shines through; however, and I relate to her discomfort of conversing in another language. I learn how surprised she is at the collaboration of patients and doctors in the US—at least those collaborations where the patients have educated themselves (thanks IMF!), and the physicians are willing to cross the borderline and meet us.
I recognize Dr. Robert A. Kyle and approach gingerly. I ask how the initial dosing in a phase 1 trial is established, given the discussions today about more or less treatment and lower and higher doses and their efficacy. We connect around Mike Katz, whom he credits with the idea of a low-dose versus high-dose dex trial, so fundamental to our quality of life. Dr. Kyle is a delight; and with just a few questions about dex, we are treated to a history of myeloma treatment going back to the sixties. He has a precise photographic memory. He mentions how Dr. Barlogie began combination therapy in high doses taking a page from the treatment of ALL. When I ask if this history has ever been written up, he responds, “It is all in the literature.” Maybe I will take up this task in a form accessible to patients.
I mentally scroll through a list of the group members that I have known and lost over 11 years. I feel more and more that these researchers and physicians do indeed mourn the death of each of their patients. The doctors seem more familiar and more human as the evening progresses. I hope they feel the same about us, the patients.
Monday, December 6, 2015: Patient-reported outcomes (PROs)
Dr. Durie wanted us to attend the patient-reported outcomes (PROs) session, and several of us were able to do so, while others headed off to different sessions. A PRO is generally a questionnaire that a patient answers, for example, about symptoms, disabilities, or their general perception of health. I am surprised that physicians are interested in learning about and utilizing PROs or that they would trust them. We are familiar with PROs from those smiley-face pain charts we are asked to complete. PROs go much deeper and start with carefully selected questions that patients answer on a regular basis. The answers are then analyzed to see whether they correlate with the results of physical tests of disease presence. PROs can pick up symptoms that may not come up in the exam room and can be a valid prognosticator. The challenge, it seems to me, is they “don’t get no respect.” That is why the National Institutes of Health brought in a PhD, a pediatrician, and an MPH to discuss them.
Here is the shocker: there have been clinical trials with results that support the following concept. For example, when the questionnaires are intelligently constructed and validated, patient answers may equal medical tests with respect to their prognostic value.
I have been thinking about second opinions. Maybe “second relationship” should be the next-generation moniker. A second opinion is a one-time occurrence. A second relationship is what patients need, whether the first relationship is with a myeloma specialist or a general hematologist/oncologist. A second relationship with a myeloma specialist affords comparison as to the efficiency, hospitality, and competency of your first relationship. It may mean that you get scheduled in more quickly for future appointments and that your medical records are already there when needed; it means hedging your bets if your first doc moves. The first appointment with a second doctor is a test of whether your primary hematologist/oncologist can and will collaborate; and most importantly, this meeting should help you to select your first treatment and when to begin it. I can’t wait to hear what our group members think of this terminology.
I am often teased in my support group for my five visits to different myeloma specialists within a span of nine days at diagnosis. It was not planned, but the result was a solid consensus on how to proceed.
The principal ASH awards (the “Ernest Beutler Lecture and Prize”) went to Dr. Paul Richardson and Dr. Arthur Goldberg—Myeloma is a very hot topic! Dr. Goldberg explains how his beginnings in proteasome research 50 years ago laid the foundation for the eventual approval of VELCADE® and Kyprolis®. Their slides visually show the “recycling bin” analogy–clog up the bin and those myeloma cells die. They are both exceedingly gracious in emphasizing that new drugs cannot be developed without the collaboration of the FDA, academia, clinicians, advocacy groups, and patients. I vow to think about when or if I will ever be on a clinical trial. Not yet, as the VRd is working; still, I am very grateful to those patients who become the test subjects and to these physicians. This was definitely a very exciting and educational session.
I should mention that walking into the “hall” where this session took place was like walking into a computer-generated movie with literally thousands and thousands of seats lined up in perfect order with 6-8 gigantic screens (40 x 30 feet I guess) to project the speakers’ faces and slides. Humans are simply amazing in what they can do!
The exhibition hall (where companies and cancer centers set up displays) was akin to visiting an interior decorating festival. The pharmaceutical companies went all out to create plush inviting spaces and welcome everyone to discuss what they were doing while offering delicious espresso and treats. One company had some extraordinary visuals so I stopped. The pharmaceutical representative explained that his company offers a method of analyzing an individual’s genes when there is a hematologic malignancy. The results are presented in a format that provides clarity to the ordering physician. For example, if there is a gene with an alteration that is known to be significant in a disease, then that gene is highlighted on page 1 of the report.
Heading home . . .
The 15 support group leaders had the stamina of 40 oxen; no one could guess that we have myeloma.
The NY Times wrote about the 750,000 medical articles published yearly (presumably this referred to articles in English and not other languages), which got me to thinking about the massive quantity of information provided at ASH. Hmmm, how does this get translated for the physician?
Have you played with those wooden paddles with an elasticized red rubber ball attached? They require skill and attentiveness. So does managing one’s treatment. There are times when we feel in control and times when that ball is bouncing all over. You just can’t hit it squarely.
My friends are interested in what happened at ASH. Support group members want to know what ASH means for them. Tune in on January 7 at 4 PM PT / 7 PM ET for the IMF’s free teleconference: the Best of ASH 2015: What Patients & Caregivers Need to Know. Dr. Durie will present on the key points for patients and caregivers from this year’s conference, and then open up the discussion for a thirty-minute question and answer session with you!
Follow John on Twitter: @IMFjohnMYELOMA
The Westchester Myeloma Support Group