Feedback from the large International Myeloma Workshop (IMW) meeting in Rome is still filtering in. There were around 3,000 attendees for this mini-ASH type symposium focused on myeloma. The event offers a comprehensive update for those not immersed in myeloma through their research or daily practice. For them, I believe this was very helpful as there are so many new drugs available and different approaches to treatment recommended.

For the myeloma aficionados, there was not much new. However, Prof. Jean-Luc Harousseau gave the opening Robert Kyle lecture, which was unique and important. Discussing “Access to innovation and quality of care in the context of economic constraints: a challenge for healthcare,” Jean-Luc, for the first time at the international level, confronted the specter of rising drug costs and the serious implications for drug access globally. The feedback from this presentation resonated throughout the meeting. Costs are now influencing all decision making, from diagnosis to monitoring, treatment and supportive care. No panaceas were offered, but the need to find answers was placed squarely on the table.

Waldenstrom’s award

In the evening of the first day, Wednesday, September 23rd, the Waldenstrom’s award this year was presented to Prof. Michele Attal from Toulouse, France. This prestigious award acknowledges Michele’s substantial accomplishments as the lead investigator for IFM (Intergroupe Francophone du Myélome) trials over the past two decades, which have set standards for the use of frontline therapies, auto-transplantation, consolidation, and maintenance strategies. Prof. Attal gave an eloquent presentation summarizing the findings and implications, which were very much appreciated by the audience.

Following this, Susie Novis, President of the IMF, had the opportunity to highlight the accomplishments of the IMF over the past two years since the last IMW meeting in Kyoto, Japan. This traditional forum for the foundation allowed Susie to show videos of global patient activities, International Myeloma Working Group (IMWG) progress, and the very significant outcomes from the IMF’s Black Swan Research Initiative®, all of which were greatly appreciated by the audience.  

The experts debate

The IMW debates held on Friday (25th) and Saturday (26th) were quite informative and interesting—even fun—as experts bantered back and forth with each other. In the debate about changing therapy according to risk status, Vincent Rajkumar offered Paul Richardson one high-heeled shoe for high risk and asked him to try it on for size to see if “one size fits all”—which obviously it did not fit at all! Nonetheless, it was still not so clear who won the debate.  Although lesser therapies can be considered for good-risk patients, it is still not clear how to treat higher-risk patients. Thus, for now, broad approaches to therapy can still be offered.

Is it feasible to modify therapy based on MRD assessment?

On Saturday, there were four debates centering on whether or not we are curing or will cure myeloma. Prof. Antonio Palumbo and myself chaired these debates. Dr. Ola Landgren proposed that modifying therapy based upon MRD assessment is currently feasible. Dr. Pieter Sonneveld argued that for now it is best to stick with baseline assessment of FISH testing and age to decide on best therapy, including the option to select a potentially curative approach. Pieter won this debate because a majority—as emphasized by Dr. Bart Barlogie during the audience response session—believe it is too soon to modify treatment based upon MRD results. This is, in fact, the exact position held by our Black Swan Research Initiative team: More studies are required. What does MRD negative mean? How long does MRD negative status need to be maintained to indicate very long remission and cure? We do not know for sure yet!

Are we curing myeloma?

During the debate on this topic, Bart argued that he believes he has been curing myeloma with his “total therapy” protocols. Nobody questions the long survivals. The debate now centers on “What is cure?” and “When can we say a patient is cured?” Bart himself emphasizes that many patients can have small “pockets” of residual disease evident on sophisticated imaging, yet remain in excellent remissions for 10 to 15 years or longer. Some patients appear to have no detectable residual disease.

Dr. Hartmut Goldschmidt argued, somewhat unenthusiastically, that we are not curing myeloma and that we will not cure myeloma even by 2020! Deep down, he feels that we are and that we will. But he actually won the debate by saying that we are not and will not be curing myeloma right away! The major concern is about possible small pockets of undetected residual disease, even in patients in complete remissions for more than 10 years. So, it is in part a sematic problem which not be fully answerable for some years to come.

Drug prices in the news – again

An article in the Wall Street Journal this week cites a new report from Tufts Medical Center in Boston and makes clear that drug costs are unsustainably high and are continuing to rise. The article provides an excellent summary of the factors causing the high, high prices. The first reason is patent protection for up to two decades. The second cause is the “insurance-based health system, in which consumers rarely feel the full brunt of price increases.” Neither doctors nor patients typically have much sense of drug prices or the potential impact these prices have on the healthcare system overall. Normal economic dynamics are dampened.

A key and helpful point is that Wall Street is starting to be aware and a little alarmed about the cost issues, especially after a recent episode of dramatic price increase for the generic drug Daraprim (by a new owner), which was widely protested and reversed. There is a sense of momentum that price increases are truly unsustainable and things must somehow change!

Health tips

The New York Times has two helpful articles this week. The first notes that drinking tea can be healthy, although maybe not as consistently healthy as drinking coffee. The second article’s point is rather more decisive: calcium, eaten in foods or taken as supplements, has little or no effect on bone density or risk of fractures! This has actually been known for some time, but reinforces recommendations for myeloma patients that treating the myeloma, appropriate exercise and use of bisphosphonates are the key steps to improve bone health.

Footnote from vacation

This past week I returned from vacation, during which I read several books. One which intrigued me, Antimatter by Frank Close, led to a realization that antimatter, which I thought really did not exist, really does “matter.” Many patients have had a PET scan. What is that? Well, it is a Positron Emission Tomography (PET) scan for which radioactive sugar is injected and taken up by active myeloma cells.

In this case, the radioactive breakdowns occur very rapidly, releasing the positrons (which is antimatter)—the opposite of electrons. The antimatter positrons which are released from the radioactive sugar collide with electrons with immediate annihilation of both releasing gamma rays which give the result in the positive detector scan.  In Dan Brown’s bestselling book, Angels and Demons, the concern was that a large bottle of positrons would destroy the Vatican and maybe a lot more! So it turns out that every day we live in balance with antimatter. There is more matter than antimatter, which is routinely annihilated. But there are lots of innovative ways to collect and use the antimatter for diagnosis and possibly treatments. So antimatter may matter more than we realize. My thought for the week!

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

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