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May 2013 Archives : Myeloma Voices


Guangzhou, China -- You may not have heard of Guangzhou, but it is a huge city in southeast China, two hours by car or rail north of Hong Kong--a bustling manufacturing and financial hub with a population of 13 million. The Pearl River Delta mega-city area, which includes Guangzhou, has a population of approximately 40 million, and encompasses Shenzhen (home of iPad production), Dongguan, Foshan, Jiangmen and Zhongshan.

The IMF Asia Team (myself; IMF President and Co-Founder Susie Novis; Lisa Paik, Senior Vice President, Clinical Education & Research Initiatives; and Daniel Navid, Vice President Global Affairs) conducted a series of events and meetings here last week to further enhance and extend our educational and research goals in China.

We began as guests at a wonderful dinner at the Dragon and Phoenix Restaurant at the Peace Hotel on the Bund in Shanghai hosted by Prof. Jian Hou along with Dr. Juan Du and the Shanghai Myeloma Center Team recipients of a 2012 research grant award. This center was really where myeloma diagnosis, treatment and research began in China with establishment of a laboratory for myeloma-protein testing--the essential first step in diagnosis.

We discussed ongoing projects and the potential for further collaboration. Exhausted, having just arrived in Shanghai, we had an early night before what turned out to be an adventurous trip south to Guangzhou.

There have been severe storms in the south of China which seriously delayed our flight, but we finally arrived safely. The Guangzhou International Multiple Myeloma Conference meetings were held at a new type of Chinese resort hotel about two hours outside the city--a huge Sheraton Hotel built in the form of an Indian lake resort that included a floating island in the middle of the lake and villas all around. Apparently, there are a number of these across the country, and they are very popular as holiday destinations. Many Chinese vacationers were checking in as we arrived.


Good Outcomes, New Research, Trial Collaborations

The first IMF meeting was with the Chinese Myeloma Working Group (CMWG), which is part of the International Myeloma Working Group (IMWG) and comprises the top Chinese myeloma experts brought together by the IMF with a focus on the coordination of myeloma care and research in China. We heard summary presentations of key study results from Shanghai, Beijing and Guangzhou. It was very impressive to see all the ongoing activities, including analysis of patterns of myeloma in Beijing. These included a median patient age of 59 years (younger than in the West), plus more frequent Immunoglobulin D (IgD) myeloma and high-risk disease with 17P- (P53 deletion) findings.

Despite that, outcomes are good, with median survivals of four years across the board. Important molecular and clinical trial research is going on in Shanghai. Special analyses of results with upfront versus delayed ASCT were presented from Guangzhou.

The broader focus was on new research and trial collaborations, including AMN trials incorporating both Kyprolis and Pomalidomide, which would allow the first introduction of these agents into China. The IMF also hopes to begin a trial with SQ Velcade, which is not yet feasible in China. It is hoped that the FREELITE test will be approved China within the next few months, and there was a lot of excitement among the myeloma MDs about the potential to soon have new access to this test for both diagnostic and response assessment.

This meeting was the followed by a reception/ dinner during which the IMF was presented with special lucky dragons as a token of appreciation.  Once again, pretty exhausted, the team retired to be ready for an early start the next day.


10 Steps to Better Care

The 3rd Annual Chinese National Myeloma Meeting, jointly hosted by the CMWG and IMF, began at 8:00 a.m. There has been great interest about the "10 Steps to Better Care," so I presented an overview to kick off the morning session. This was followed by an overview of FREELITE testing and then two presentations by Dr. Andrew Spencer, an IMWG member from Melbourne, Australia, who presented the whole range of current approaches to myeloma therapy, including detailed case discussions.

There was a comprehensive review of myeloma therapy in China from the Chinese experts--predominantly members of the CMWG.

On Sunday, May 19th the IMF joined with the myeloma team at Sun Yat-sen College of Medical Science to conduct a Patient Seminar. The local host was Dr. Juan Li, along with her colleague Dr. Gu (Grace Ku - English name).

Susie Novis presented background about the IMF and supportive care perspectives, which was greatly appreciated. This was followed by Prof. Wen-Ming Chen, who gave an overview about care in China. Then I presented the approaches to myeloma treatment in the U.S. in 2013.


Knowledge Is Power

A key element was the basic IMF approach for patients--"Knowledge Is Power"--giving myeloma patients the tools they need to get the best care. I summarized everything from basic testing to recommended treatment options. Then the Sun Yat-sen team presented local approaches and results.

This was followed by an extended Q&A session, with patients standing up to present their individual cases and questions/concerns.

Dr. Andrew Spencer accompanied us to the seminar and helped handle the questions, which was much appreciated and very helpful. As it turned out this was especially helpful since there were a whole series of questions about thalidomide maintenance (an area of research for Dr. Spencer). Patients routinely used ongoing thalidomide maintenance at a dosage of 200mg / day (or more) and, unfortunately, develop significant neuropathy. It was recommended to limit this type of maintenance to 9 to 12 months (based on the Australian data) and also to use doses of 50 to 100mg at the most.

Patients needed great reassurance to consider stopping thalidomide (because of understandable concerns about relapse in the setting of many fewer post-relapse treatment options). It was emphasized that for good-risk patients (without, for example, high-risk FISH / chromosome findings) monitoring OFF Rx is an acceptable / safe option.  

"Great challenges--but also great potential to improve outcomes for myeloma patients wherever they live."

After many emotional questions and answers the session drew to a close. Susie re-emphasized the need to keep patients informed and participate in decisions--really a new approach--openly accepted as a key perspective moving forward. And so to a wonderful Chinese lunch and a chance to further discuss especially difficult patient problems.

Our time in China came to a close with promises to stay in touch and establish further ongoing collaborations.

Exhaustion set in once again as our team prepared to move on to Australia and, ultimately, return home and plan for the future, assimilating all of our new experiences. There are great challenges-- but also great potential to improve outcomes for myeloma patients wherever they live!!

This trip would not have been such a great success without the dedicated help of the whole team, especially Lisa Paik, who helped arrange everything, and Dan Navid. As they say, "without them we would be nothing." A key additional team member is Danielle Loi back at the home office who helped support and coordinated from afar. Sincere thanks to Danielle!


Being interviewed by Sheila Dillon for BBC Radio this week was a great pleasure for me. Sheila is a food expert with an interest in the relationship between food and cancer.

A key question was the relevance of a U.K. book, "Food to Fight Cancer," by Richard Beliveau and Denis Bingras. This beautifully illustrated book summarizes the health benefits of everything from cabbage to chocolate! But the question is: can one really fight cancer with food alone? My answer quite simply was no! I stressed that one cannot eat one's way out of cancer.

In 2013, for myeloma in particular, there are many novel therapy approaches to treatment, which work extremely well: VELCADE, Thalomid, REVLIMID, plus new agents, POMALYST and KYPROLIS. These are the mainstays of treatment.

So what aspects of food are important? Eating "real food" is the most important step to healthy living. Avoid processed and fast foods as well as sodas, as I have discussed in previous blogs. Do not go overboard. There are only limited data to support the added value of particular healthy vegetables, fruits, herbal drinks, and juices.

In "The Blue Zones," a book by Dan Buettner about places in the world where people live to be over 100 years old, the diets are rather simple plant-based diets that include omega-3 fatty acids and usually some red wine with polyphenols. What is missing are the fast foods and sodas.

"That's all very well for people living in beautiful 'Blue Zones' with wonderful air and water, but what about us living in London or Los Angeles?" Sheila asked.

My answer is that we have to do the best we can to create our own "blue zones." Eating as healthfully as we can undoubtedly boosts our immune systems, as does reducing stress, getting exercise and sleep. As they say on Ikaria--the Blue Zone island close to Turkey--naps are OK!

But where does one get this kind of advice and specific help?Brian-Durie-BBC-042913.jpg

Unfortunately, doctors are really not trained in detailed nutrition and health as they should be! The focus is on disease. So

it is important to seek the best advice possible from experts such as Sheila Dillon, as well as authors, such as Nina Planck (author of "Real Food") and Michael Pollan (whose new book is "Cooked"). If you want to really know what NOT TO EAT, the new bible on this is, in my view, "Salt Sugar Fat" by Michael Moss, who provides a comprehensive, sobering look at the processed food industry.

So, there you have it! Focus on the new treatments we have, but also pay close attention to what you eat. These are exciting times in myeloma research. The IMF's Black Swan Research Initiative� is for the first time redefining and searching for a cure! Exciting times indeed!

Check back at the IMF website for the air date of Dr. Durie's interview on BBC Radio 4.