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    <title>Myeloma Voices</title>
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    <id>tag:myeloma.org,2011-01-12:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22</id>
    <updated>2013-05-24T11:37:48Z</updated>
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<entry>
    <title>China 2013: IMF Holds Meetings in Guangzhou, China</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2013/05/china-2013-imf-holds-meetings-in-guangzhou-china.html" />
    <id>tag:myeloma.org,2013:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.660411</id>

    <published>2013-05-23T08:03:07Z</published>
    <updated>2013-05-24T11:37:48Z</updated>

    <summary><![CDATA[Guangzhou, China&nbsp;--&nbsp;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...]]></summary>
    <author>
        <name>Brian G.M. Durie, MD</name>
        <uri>http://myeloma.org/ArticlePage.action?tabId=12&amp;menuId=55&amp;articleId=267&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=55&amp;parentIndexPageId=29&amp;parentCategoryId=93</uri>
    </author>
    
        <category term="Dr. Durie&apos;s Blogs" scheme="http://www.sixapart.com/ns/types#category" />
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="DurieBlog_Guangzhou.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/DurieBlog_Guangzhou.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p><strong style="font-size: 1em;">Guangzhou, China&nbsp;</strong><span style="font-size: 1em;">--</span><strong style="font-size: 1em;">&nbsp;</strong><span style="font-size: 1em;">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.</span></p>
<p>The IMF Asia Team (myself; IMF President and Co-Founder Susie Novis; Lisa Paik, Senior Vice President, Clinical Education &amp; 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.</p>
<p>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. </p>
<p>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.</p>
<p>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.</p>
<img alt="CMWG-Guangzhou-blog.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/CMWG-Guangzhou-blog.jpg" width="250" height="132" class="mt-image-right" style="float: right; margin: 0 0 20px 20px;" /><p><strong>Good Outcomes, New Research, Trial Collaborations</strong></p>
<p>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. </p>
<p>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. </p>
<p>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. </p>
<p>This meeting was the followed by a reception/ dinner during which the IMF was presented with special lucky dragons as a token of appreciation. &nbsp;Once again, pretty exhausted, the team retired to be ready for an early start the next day.</p>
<img alt="Guangzhou_Mtg_blog1.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/Guangzhou_Mtg_blog1.jpg" width="250" height="142" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p><strong>10 Steps to Better Care</strong></p>
<p>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.</p>
<p>There was a comprehensive review of myeloma therapy in China from the Chinese experts--predominantly members of the CMWG.</p>
<p>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).</p>
<p>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.</p>
<img alt="Guangzhou_DrGu_blog2.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/Guangzhou_DrGu_blog2.jpg" width="250" height="142" class="mt-image-right" style="float: right; margin: 0 0 20px 20px;" /><p><strong>Knowledge Is Power</strong></p>
<p>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.</p>
<p>This was followed by an extended Q&amp;A session, with patients standing up to present their individual cases and questions/concerns. </p>
<p>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. </p>
<table width="100%" border="0" cellpadding="0">
  <tbody><tr>
    <td width="64%">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.</td>
    <td width="3%">&nbsp;</td>
    <td width="33%"><h4><font color="#990000"><strong>"Great challenges--but also great potential to improve outcomes for myeloma patients wherever they  live."</strong></font></h4></td>
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<p>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.</p>
<p>Our time in China came to a close with promises to stay in touch and establish further ongoing collaborations.</p>
<p>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!!</p>
<p>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!</p>]]>
        
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<entry>
    <title>On the Subject of Cancer and Diet: My Interview with BBC Radio</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2013/05/on-the-subject-of-cancer-and-diet-my-interview-with-bbc-radio.html" />
    <id>tag:myeloma.org,2013:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.660376</id>

    <published>2013-05-02T21:04:46Z</published>
    <updated>2013-05-23T22:04:44Z</updated>

    <summary>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....</summary>
    <author>
        <name>Brian G.M. Durie, MD</name>
        <uri>http://myeloma.org/ArticlePage.action?tabId=12&amp;menuId=55&amp;articleId=267&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=55&amp;parentIndexPageId=29&amp;parentCategoryId=93</uri>
    </author>
    
        <category term="Dr. Durie&apos;s Blogs" scheme="http://www.sixapart.com/ns/types#category" />
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<div><img alt="DurieBlog_bbc.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/DurieBlog_bbc.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p>Being interviewed by <a href="http://www.bbc.co.uk/programmes/b006qnx3/presenters/sheila-dillon">Sheila Dillon</a> 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.</p>
 <p>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. </p>
 <p>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.</p>
 <p>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 <a href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2012/10/the-island-where-people-forget-to-die-is-eating-real-food-the-reason.html">blogs</a>. Do not go overboard. There are only limited data to support the added value of particular healthy vegetables, fruits, herbal drinks, and juices. </p>
 <p>In <a href="http://www.barnesandnoble.com/w/blue-zones-dan-buettner/1100480323">"The Blue Zones,"</a> 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.</p>
 <p>"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. </p>
 <p>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!</p>
 <p>But where does one get this kind of advice and specific help?<img alt="Brian-Durie-BBC-042913.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/Brian-Durie-BBC-042913.jpg" width="300" height="224" class="mt-image-right" style="float: right; margin: 0 0 20px 20px;" /></p>
 <p>Unfortunately, doctors are really not trained in detailed nutrition and health as they should be! The focus is on disease. So</p>
 <span style="font-size: 1em;">it is&nbsp;</span><span style="font-size: 1em;">important to seek the best advice possible from experts such as Sheila&nbsp;</span><span style="font-size: 1em;">Dillon, as well as authors, such as Nina Planck (author of "</span><a href="http://www.amazon.com/Real-Food-What-Eat-Why/dp/1596913428" style="font-size: 1em;">Real Food</a><span style="font-size: 1em;">") and Michael Pollan (whose new book is "</span><a href="http://www.amazon.com/s/ref=nb_sb_ss_i_0_9?url=search-alias%3Dstripbooks&amp;field-keywords=cooked%20michael%20pollan&amp;sprefix=cooked+mi%2Cstripbooks%2C197&amp;rh=i%3Astripbooks%2Ck%3Acooked%20michael%20pollan&amp;sepatfbtf=true&amp;tc=1367526639464" style="font-size: 1em;">Cooked</a><span style="font-size: 1em;">"). If you want to really know what NOT TO EAT, the new bible on this is, in my view, "</span><a href="http://www.amazon.com/Salt-Sugar-Fat-Giants-Hooked/dp/1400069807/ref=sr_1_1?s=books&amp;ie=UTF8&amp;qid=1367526782&amp;sr=1-1&amp;keywords=sugar+salt+fat" style="font-size: 1em;">Salt Sugar Fat</a><span style="font-size: 1em;">" by Michael Moss, who provides a comprehensive, sobering look at the processed food industry.</span></div><div><br />
 <p>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 <a href="http://myeloma.org/PortalPage.action?tabId=8&amp;menuId=125&amp;portalPageId=18">Black Swan Research Initiative™</a> is for the first time redefining and searching for a cure! Exciting times indeed!</p>
 <p><em>Check back at the </em><a href="http://www.myeloma.org"><em>IMF website</em></a><em> for the air date of Dr. Durie's interview on BBC Radio 4.</em></p>
</div>]]>
        
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<entry>
    <title>Highlights from the 14th International Myeloma Workshop</title>
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    <id>tag:myeloma.org,2013:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.660324</id>

    <published>2013-04-11T22:25:06Z</published>
    <updated>2013-05-23T23:07:46Z</updated>

    <summary><![CDATA[The IMF team has just returned from the International Myeloma Workshop (IMW) meeting in Kyoto, Japan, held from April 3rd through April 7th, 2013. The IMW was like a "mini-ASH" devoted to myeloma.&nbsp;The meeting had a jam-packed program running from...]]></summary>
    <author>
        <name>Brian G.M. Durie, MD</name>
        <uri>http://myeloma.org/ArticlePage.action?tabId=12&amp;menuId=55&amp;articleId=267&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=55&amp;parentIndexPageId=29&amp;parentCategoryId=93</uri>
    </author>
    
        <category term="Dr. Durie&apos;s Blogs" scheme="http://www.sixapart.com/ns/types#category" />
    
    <category term="asia" label="Asia" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="cancer" label="cancer" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="cherryblossom" label="Cherry blossom" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="imw" label="imw" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="internationalmyelomaworkinggroup" label="International Myeloma Working Group" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="internationalmyelomaworkshop" label="International myeloma workshop" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="japan" label="Japan" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="kyoto" label="Kyoto" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="landgren" label="landgren" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="lonial" label="lonial" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="minimalresidualdisease" label="Minimal Residual Disease" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="mrd" label="mrd" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="myeloma" label="myeloma" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="orlowski" label="orlowski" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="plenarysession" label="Plenary Session" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="research" label="research" scheme="http://www.sixapart.com/ns/types#tag" />
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="DurieBlog_Kyoto2.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/DurieBlog_Kyoto2.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><div>The IMF team has just returned from the International Myeloma Workshop (IMW) meeting in Kyoto, Japan, held from April 3rd through April 7th, 2013. The IMW was like a "mini-ASH" devoted to myeloma.&nbsp;</div><div><br /></div><div>The meeting had a jam-packed program running from 7 a.m. until 9 p.m. with investigators squeezing in extra meetings before, after and in between. The broad scope of myeloma was covered in education sessions as well as debates and Q &amp; A sessions. &nbsp;Corporate-sponsored sessions were interspersed with traditional scientific sessions. There was also a large area for poster presentations.</div><div><br /></div><div>The meeting began with a fireworks display, which kicked off the first night's special opening ceremony at the lake area adjacent to the venue in Kyoto. This was greatly appreciated by the attendees who, from that point forward, were busy from morning until late at night.</div><div><br /></div><div>Although many sessions were overview summaries, a number of new aspects are worthy of note. &nbsp;For example, on Friday April 5th there was a spirited debate between Dr. Sagar Lonial and Dr. Robert Orlowski on the value of Minimal Residual Disease assessment. It seemed that Dr. Orlowski "won," affirming the need for new and better testing for M.R.D., which is part of the IMF's <a href="http://blackswan.myeloma.org">Black Swan Research Initiative</a>™ (BSRI™).&nbsp;</div><div><br /></div><div>In the Plenary Session on Saturday morning, several treatment-related abstracts were presented, many with updates from ASH presentations in December 2012. An important new presentation was from Dr. Ola Landgren, who showed for the first time results with Kyprolis/Revlimid/Dexamethasone in high-risk smoldering myeloma (early active myeloma).</div><div>Although the results are early, the depth of responses is very impressive and results are promisingly excellent.&nbsp;</div><div><br /></div><div>A key added benefit at the workshop for most myeloma investigators was the opportunity to network and discuss active and potential new projects. &nbsp;It was clear that, for the future, this is an important aspect and needs to be enhanced by allowing more time during the meeting and locating it at a venue nearer to hotels and lodgings.</div><div><br /></div><div>By arriving a day early, the IMF was able to facilitate several meetings, including the International Myeloma Working Group (IMWG) breakfast meeting, the Asian Myeloma Network meeting, a Pomalidomide Roundtable, and an interactive discussion/debate of current myeloma therapies in Asia versus those in the U.S. and Europe. In addition, IMF team members Lisa Paik and Dan Navid accompanied a group of Chinese myeloma specialists for a full-day hospital visit, which was very well received.</div><div><br /></div><div>The following day, at the official start of the IMW, IMF President and Co-Founder Susie Novis was given the opportunity to present on the research activities of the IMF. &nbsp;The audience was treated to a short video presentation that highlighted the work of the International Myeloma Working Group, Asian Myeloma Network, and some of the other research programs supported by the IMF.</div><div><br /></div><div><iframe width="560" height="315" src="http://www.youtube.com/embed/P0IVNoNNdzE" frameborder="0" allowfullscreen=""></iframe></div><div><br /></div><div>In addition, the IMF Japan held a patient seminar on Saturday, April 6th. &nbsp;Susie presented a program about the "power of information" for patient care &nbsp;and was very well received by the group meeting, led by Ms. Kyoko Joko and supported by Mrs. Midori Horinouchi.&nbsp;</div><div><br /></div><div>This IMW was exhausting, but rewarding. Many new connections were made. Many plans for the future were organized. There are now great hopes and expectations for the next IMW, to be held in Rome in September 2015, hosted by Doctors Antonio Palumbo, Mario Boccadoro, and Michele Cavo. In the meantime, we all have very pleasant memories of the cherry blossoms, which were in full bloom for the Kyoto meeting and greatly appreciated by all. &nbsp;</div><div><br /></div><div>Congratulations to Prof. Kazuyuki Shimizu and his local organizing committee for organizing a great workshop.</div><div><br /></div><img alt="kyoto1.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/kyoto1.jpg" width="400" height="400" class="mt-image-center" style="text-align: center; display: block; margin: 0 auto 20px;" /><div><br /></div><br /><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div>

<div class="zemanta-pixie" style="margin-top:10px;height:15px"><a class="zemanta-pixie-a" href="http://www.zemanta.com/?px" title="Enhanced by Zemanta"><img class="zemanta-pixie-img" src="http://img.zemanta.com/zemified_e.png?x-id=3e05ead8-cab7-47d9-a2e1-75210183a635" alt="Enhanced by Zemanta" style="border:none;float:right" /></a></div>]]>
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<entry>
    <title>Understanding Second Primary Malignancies (SPMs) in Myeloma:  Caution Required in Interpretation of New and Evolving Data</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2013/03/understanding-second-primary-malignancies-spms-in-myeloma-caution-required-in-interpretation-of-new-.html" />
    <id>tag:myeloma.org,2013:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.660296</id>

    <published>2013-03-22T08:56:11Z</published>
    <updated>2013-03-27T19:00:10Z</updated>

    <summary><![CDATA[EDIT 3/27/2013: Over the past few weeks I have received many comments my two most recent blogs. I&nbsp;apologize for not responding to your comments and questions. Please know that they are very important to me. I am travelling to the...]]></summary>
    <author>
        <name>Brian G.M. Durie, MD</name>
        <uri>http://myeloma.org/ArticlePage.action?tabId=12&amp;menuId=55&amp;articleId=267&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=55&amp;parentIndexPageId=29&amp;parentCategoryId=93</uri>
    </author>
    
        <category term="Dr. Durie&apos;s Blogs" scheme="http://www.sixapart.com/ns/types#category" />
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="durieblog_app.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/durieblog_app.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><div><p><span style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;"><i><b>EDIT 3/27/2013:</b> Over the past few weeks I have received many comments my two most recent blogs. I</i></span><span style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;"><i>&nbsp;apologize for not responding to your comments and questions. Please know that they are very important to me. I am travelling to the International Myeloma Workshop in Kyoto, Japan, and will respond on my return. In the meantime, if you have a medical question, please contact the IMF Hotline at 1-800-452-CURE (2873)</i>.</span></p><p><span style="font-size: 1em;">Two recent journal reports--one in </span><a href="http://www.nature.com/bmt/journal/vaop/ncurrent/full/bmt201310a.html" style="font-size: 1em;">NATURE</a><span style="font-size: 1em;">
the other in </span><a href="http://jco.ascopubs.org/content/31/4/448.abstract" style="font-size: 1em;">CLINICAL
ONCOLOGY</a><span style="font-size: 1em;">--draw attention to concerns about the occurrence of
second primary malignancies (SPMs) in patients with myeloma.&nbsp;</span></p>

<p>The first article reports the long-term follow-up of patients who received plerixafor (Mozobil<sup>®</sup>) to mobilize stem cells prior to auto-stem cell transplant (ASCT) between 2006 and 2009. Of 43 patients who were able to proceed to ASCT, 4 developed MDS (myelodysplastic syndrome) and 1 developed AML (acute myelogenous leukemia). Actually, only one of these patients had myeloma: the others had a prior diagnosis of lymphoma. In addition, the single myeloma patient had received a prior ASCT before the second harvesting using plerixafor.&nbsp; Thus, the subsequent onset of MDS/AML in this sole myeloma patient is definitely multifactorial in origin.</p><p>Let me explain.</p>

<p>First, it is known that there is an increased risk of MDS/AML in patients even before therapy when they have an MGUS/smoldering myeloma precursor state. Second, therapy-related MDS/AML is a well-recognized late complication with the use of high-dose melphalan (200 mg/m<sup>2</sup>) which this patient received. Third, patients who are difficult to harvest--in which plerixafor is used preferentially--are known to have reduced stem function
and may have pre-existing latent MDS type cellular injury.</p>

<p>So to what extent did the use of plerixafor as a growth factor increase the likelihood of overt MDS/AML in this one myeloma patient?</p>

<p>Although the authors clearly raise this concern, they also write that further studies are required.&nbsp; The key point in my mind is that this difficult-to-harvest subgroup of patients is intrinsically at higher risk of developing MDS/AML. Thus, it is especially important to carefully assess for underlying MDS in such patients before proceeding to harvest. Until more information is available, it is probably reasonable to consider excluding such patients with documented underlying MDS (based upon cytogenetic/FISH) from further harvesting attempts. In this single
reported myeloma case, the MDS/AML is more linked to the myeloma itself and prior myeloma therapy than the brief use of plerixafor for mobilization.</p>

<p>The second study provides an update with longer term follow-up of the previously reported VISTA trial, which compares melphalan/prednisone (MP) with Velcade<sup>®</sup> plus melphalan/prednisone (VMP). In this study, use of Velcade for up to approximately one year in the VMP arm did not lead to an increased occurrence of SPMs versus the MP arm of the study. The SPM rates of 4-6% are similar to previous studies evaluating the impact of melphalan. Thus, in this case, there is an increased SPM risk linked to use of oral melphalan, but this is not enhanced with Velcade use. The open question is the use of melphalan versus Cytoxan<sup>®</sup> (cyclophosphamide) as an alkylating agent. The recent excellent results with CyBorD (<b>C</b>yotxan/<b>b</b>ortezomib [Velcade]/<b>d</b>examethasone [weekly]) provide an option to be considered</p>

<p>With all the novel approaches, as in life in general, "the devil is the details." So stay tuned as more information becomes available to assess the risks and options related to the development of SPMs. But for now, no drastic change in recommendations.</p>

<p>1. <a href="http://www.nature.com/bmt/journal/vaop/ncurrent/full/bmt201310a.html">http://www.nature.com/bmt/journal/vaop/ncurrent/full/bmt201310a.html</a></p>

<p>2. <a href="http://jco.ascopubs.org/content/31/4/448.abstract">http://jco.ascopubs.org/content/31/4/448.abstract</a></p></div>]]>
        
    </content>
</entry>

<entry>
    <title><![CDATA[The IMF's Black Swan Research Initiative&trade; Opens a New Pathway to a Cure]]></title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2013/03/the-imfs-black-swan-research-initiative-opens-a-new-pathway-to-a-cure.html" />
    <id>tag:myeloma.org,2013:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.660201</id>

    <published>2013-03-14T19:37:35Z</published>
    <updated>2013-05-23T22:48:35Z</updated>

    <summary><![CDATA[EDIT 3/27/2013:&nbsp;Over the past few weeks I have received many comments my two most recent blogs. I&nbsp;apologize for not responding to your comments and questions. Please know that they are very important to me. I am travelling to the International...]]></summary>
    <author>
        <name>Brian G.M. Durie, MD</name>
        <uri>http://myeloma.org/ArticlePage.action?tabId=12&amp;menuId=55&amp;articleId=267&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=55&amp;parentIndexPageId=29&amp;parentCategoryId=93</uri>
    </author>
    
        <category term="Dr. Durie&apos;s Blogs" scheme="http://www.sixapart.com/ns/types#category" />
    
    <category term="blackswan" label="black Swan" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="blackswanresearchinitiative" label="Black Swan Research Initiative" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="bsri" label="BSRI" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="cancer" label="Cancer" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="clinicaltrial" label="Clinical trial" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="cure" label="cure" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="minimalresidualdisease" label="Minimal Residual Disease" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="multiplemyeloma" label="Multiple myeloma" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="myeloma" label="myeloma" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="myelomaresearch" label="myeloma research" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="patient" label="Patient" scheme="http://www.sixapart.com/ns/types#tag" />
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="DurieBlog_BSRI.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/DurieBlog_BSRI.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><div><span style="font-size: 12.727272033691406px; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 17.99715805053711px;"><i><b>EDIT 3/27/2013:</b>&nbsp;Over the past few weeks I have received many comments my two most recent blogs. I</i></span><span style="font-size: 12.727272033691406px; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 17.99715805053711px;"><i>&nbsp;apologize for not responding to your comments and questions. Please know that they are very important to me. I am travelling to the International Myeloma Workshop in Kyoto, Japan, and will respond on my return. In the meantime, if you have a medical question, please contact the IMF Hotline at 1-800-452-CURE (2873)</i>.</span></div><div><span style="font-size: 12.727272033691406px; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 17.99715805053711px;"><br /></span></div><div>On Tuesday, March 12, we were excited to announce the launch of the IMF's <b><a href="http://blackswan.myeloma.org">BLACK SWAN RESEARCH INITIATIVE</a>™ </b>(<b>BSRI™</b>) to develop the first definitive cure for myeloma. The BSRI now joins the groundbreaking and innovative myeloma research the IMF has actively supported for more than twenty years.&nbsp;</div><div><br /></div><div>Gratifyingly, the launch announcement is generating lots of enthusiasm ("Bring it on!" reads a post on our<a href="http://facebook.com/myeloma"> Facebook</a> Page). It has also prompted questions from some patients who want to know how the BSRI will affect them depending on whether they are newly diagnosed or were diagnosed many years ago.</div><div><br /></div><div>Let me explain by reviewing the key components of the Black Swan Research Initiative.&nbsp;</div><div><br /></div><div>A combination of new myeloma treatment options available now and the availability of ultra-sensitive means of measuring the disease has set the stage for this unique approach to research.</div><div><br /></div><div>Within the new paradigm of the BSRI, the definitive key to the cure is something we call <b>MRD-Zero™</b>. MRD stands for Minimal Residual Disease, and by measuring minimal residual disease we can determine how close a patient is to being cured of myeloma. With no detectable MRD, we are there.&nbsp;</div><div><br /></div><div>Sophisticated, ultra-sensitive testing tools that can measure MRD on cellular and molecular levels will allow researchers to study individual myeloma patients at all stages to determine which treatments given at which times yield the best results. The best results, of course, will be the eradication of all residual disease.&nbsp;</div><div><br /></div><div>Armed with that knowledge, acquired through clinical trials, we can begin to develop a cure for all myeloma patients.&nbsp;</div><div><br /></div><div>The BSRI announcement &nbsp;focused on one avenue of curing myeloma for a subset of patients, but it is only the first step of many to come. Initial work began on the Black Swan Research Initiative in the summer of 2012, and while some early results are promising, a number of important ramifications will be revealed moving forward. &nbsp;</div><div><br /></div><div>The important point in our announcement this week was to set out the framework for the Black Swan Research Initiative's unique approach to a cure. Now that we have, we hope you are as excited as we are to see what materializes as we unlock the mysteries of myeloma. Our goal is to have testing in place and clinical trials ready to start by year's end.</div><div><br /></div><div>Stay tuned.</div><div><br /></div>

<div class="zemanta-pixie" style="margin-top:10px;height:15px"><a class="zemanta-pixie-a" href="http://www.zemanta.com/?px" title="Enhanced by Zemanta"><img class="zemanta-pixie-img" src="http://img.zemanta.com/zemified_e.png?x-id=f3a31ef5-6ad0-41b6-80ba-2000da500d24" alt="Enhanced by Zemanta" style="border:none;float:right" /></a></div>]]>
        
    </content>
</entry>

<entry>
    <title>Paperwork Required to Receive 9/11 Myeloma Coverage</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2013/02/paperwork-required-to-receive-911-myeloma-coverage.html" />
    <id>tag:myeloma.org,2013:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.660027</id>

    <published>2013-02-06T15:55:09Z</published>
    <updated>2013-02-06T16:34:53Z</updated>

    <summary><![CDATA[ The personal stories of toxic exposures potentially linked to myeloma just keep on coming! I am grateful to all who shared them with me. And once again, the 9/11 compensation fund was in the news on January 30th.&nbsp; The...]]></summary>
    <author>
        <name>Brian G.M. Durie, MD</name>
        <uri>http://myeloma.org/ArticlePage.action?tabId=12&amp;menuId=55&amp;articleId=267&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=55&amp;parentIndexPageId=29&amp;parentCategoryId=93</uri>
    </author>
    
        <category term="Dr. Durie&apos;s Blogs" scheme="http://www.sixapart.com/ns/types#category" />
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="durieblog_app.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/durieblog_app.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" />
<p>The  personal stories of toxic exposures potentially linked to myeloma just keep on  coming! I am grateful to all who shared them with me. And once again, <a href="http://www.nyc.gov/html/doh/wtc/html/health_compensation/health_compensation_act.shtml">the 9/11  compensation fund</a> was in the <a href="http://www.nytimes.com/2013/01/30/nyregion/9-11-health-compensation-fund-makes-first-payouts.html?_r=0">news</a> on January 30th.&nbsp; The first 15 compensation awards were given  out--but none to cancer patients. Sheila Birnbaum, the special master of the  $2.8-billion fund, said she had not awarded money for cancer yet because she  had not received completed applications. Of the 16,000 people who have  registered, only 2,500 have submitted eligibility forms, and, of those, only  190 have submitted compensation forms and many lack documentation!</p>
<p>So,  the dreadful task of completing all the paperwork seems to be the key to  potential compensation, and staff advice is apparently available. Myeloma  patients need to work through these details in as timely a manner as possible  to take advantage of available compensation, as the fund expires in 2016! Current  estimates are that over of $8.5 billion will be required to compensate the  thousands of people potentially eligible--$6 billion more than the amount  approved by Congress in 2010. Being at the front of the queue could prove to be  quite important!</p>
<p>Many  people have responded to my previous blogs on this topic, including Hardy  Jones. Hardy documented the toxic  pollution in his system by having his tissue levels tested and had extremely  high mercury levels reduced with chelation therapy. His unwavering work to  assess and document environmental pollution (he was featured in an <a href="http://www.npr.org/templates/story/story.php?storyId=99970093">NPR story</a> in 2009) is  applauded by all and can hopefully lead to meaningful protections and regulatory  changes. &nbsp;</p>
Comments  posted by many people here support the correlation between toxic exposures and  the subsequent diagnosis of myeloma. Unfortunately, these have to be evaluated  on a case by case basis. There are two key points to keep in mind.&nbsp; First, anyone concerned about toxic exposure  should limit potentially harmful exposure. Second, fortunately, the outcomes  for myeloma patients have been improving dramatically with use of novel  therapies available in the last 5-10 years, with new drugs being approved in  rapid succession. Early diagnosis and getting started on therapy are very  important. I urge people who were exposed to toxic chemicals during 9/11 be  screened for MGUS or smoldering myeloma, which are precursors to active  myeloma. I strongly recommended this course of action since early diagnosis  will undoubtedly lead to the best results.]]>
        
    </content>
</entry>

<entry>
    <title>Broad Concerns About Toxic Exposures And Myeloma</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2013/01/broad-concerns-about-toxic-exposures-and-myeloma.html" />
    <id>tag:myeloma.org,2013:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.660026</id>

    <published>2013-01-24T21:29:02Z</published>
    <updated>2013-01-24T21:42:34Z</updated>

    <summary>My recent blog, &quot;New Study Provides Clues to What Causes Myeloma,&quot; clearly struck a chord with many myeloma patients. The heartfelt comments and questions are noted and really appreciated. A first point is that New York residents or people working...</summary>
    <author>
        <name>Brian G.M. Durie, MD</name>
        <uri>http://myeloma.org/ArticlePage.action?tabId=12&amp;menuId=55&amp;articleId=267&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=55&amp;parentIndexPageId=29&amp;parentCategoryId=93</uri>
    </author>
    
        <category term="Dr. Durie&apos;s Blogs" scheme="http://www.sixapart.com/ns/types#category" />
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="durieblog_app.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/durieblog_app.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0px 20px 20px 0px;" /><div>My recent blog, "<a href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2013/01/new-study-provides-clues-to-what-causes-myeloma.html">New Study Provides Clues to What Causes Myeloma</a>," clearly struck a chord with many myeloma patients. The heartfelt comments and questions are noted and really appreciated. A first point is that New York residents or people working in New York who believe they were exposed to toxins by the 9/11 event ARE indeed eligible for screening and
treatment under the <a href="http://www.nyc.gov/html/doh/wtc/html/health_compensation/health_compensation_act.shtml">Zadroga Act and World Trade Center Health Program</a>. But the powerful vision of toxic exposures in New York reminded many of you of possible or probable toxic exposures in your own cases. From 1-3 butadiene exposure at Rexam Graphics to pesticide exposures, tours of duty in Vietnam (and/or neighboring countries) with Agent Orange and dioxin exposures, fumes from asphalt and/or construction sites, or general industrial pollution, very valid correlations and concerns are raised.<p></p>
<p>For New Yorkers, it is very important to seek screening and follow-up or treatment. The designated centers of
excellence are noted in the link above. Early assessment, diagnosis, and treatment are keys to achieve the best
outcomes.</p>

<p>For others with broader concerns and questions about toxic exposures, much more needs to be done. In a new
editorial in the New York Times (Sunday, January 20, 2013), Nicholas D. Kristof discusses what he calls "<a href="http://www.nytimes.com/2013/01/20/opinion/sunday/kristof-warnings-from-a-flabby-mouse.html?_r=0">warnings from a flabby mouse</a>." You may be aware that obesity has been linked to an increased likelihood of myeloma. The key question has been: "Does obesity in some way trigger myeloma or does some chemical or toxic exposure trigger obesity, diabetes, myeloma, and possibly other cancers?" Nicholas highlights the work of renowned researcher, Bruce Blumberg, at the University of California, who coined the term, "obesogen," for chemicals that cause increased fat storage. These obesogens are the exact same types of chemicals that can cause myeloma: endocrine disrupter chemicals including dioxins, chemicals from plastics and rubber, agricultural chemicals, as well as
chemicals in foam cushions and jet fuel (<a href="http://endo.endojournals.org/content/147/6/s50.full.pdf+html">http://endo.endojournals.org/content/147/6/s50.full.pdf+html</a>).</p>

<p>So it seems that the epidemic of obesity and diabetes may be linked to increases in the incidence of myeloma in recent years. Thus, as they say, "the plot thickens." The scenario of widespread environmental chemical pollution, how to assess it, and what to do about it is such a large and important topic that I will return to it in future blogs.</p>

<p>For now, be aware and seek advice as needed. The overriding motto of the IMF is "knowledge
is power."</p></div>]]>
        
    </content>
</entry>

<entry>
    <title>New Study Provides Clues to What Causes Myeloma</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2013/01/new-study-provides-clues-to-what-causes-myeloma.html" />
    <id>tag:myeloma.org,2013:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.660025</id>

    <published>2013-01-10T20:03:20Z</published>
    <updated>2013-01-10T20:07:11Z</updated>

    <summary>Six months ago, cancer was added to the list of illnesses covered by the $3.4 billion World Trade Center fund. Now, as reported on December 19th in the New York Times, the New York City Health Department has completed a...</summary>
    <author>
        <name>Brian G.M. Durie, MD</name>
        <uri>http://myeloma.org/ArticlePage.action?tabId=12&amp;menuId=55&amp;articleId=267&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=55&amp;parentIndexPageId=29&amp;parentCategoryId=93</uri>
    </author>
    
        <category term="Dr. Durie&apos;s Blogs" scheme="http://www.sixapart.com/ns/types#category" />
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="durieblog_app.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/durieblog_app.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p class="MsoPlainText"><span style="font-size:12.0pt;font-family:&quot;Times New Roman&quot;,&quot;serif&quot;">Six
months ago, cancer was added to the list of illnesses covered by the $3.4
billion World Trade Center fund. Now, as reported on December 19th in the </span><a href="http://www.nytimes.com/2012/12/19/nyregion/no-clear-link-between-cancer-and-9-11-debris-new-york-health-dept-study-finds.html?pagewanted=all&amp;_r=2&amp;"><span style="font-size:12.0pt;font-family:&quot;Times New Roman&quot;,&quot;serif&quot;">New York Times</span></a><span style="font-size:12.0pt;font-family:&quot;Times New Roman&quot;,&quot;serif&quot;">, the New York
City Health Department has completed a study that compares cancer rates among
9/11 responders with overall cancer rates for New York State. Myeloma is at the
top of the list of cancers occurring at a statistically higher rate in 9/11
responders. Myeloma is occurring at a 3-fold increased rate: the rate being +185%
versus the average for New York State. Thyroid cancer was at +102% and prostate
cancer at +43%. All others were not statistically increased in this study.</span></p>

<p class="MsoPlainText"><span style="font-family: 'Times New Roman', serif; font-size: 12pt;">The
findings are controversial in part because it is very early to be assessing the
ultimate risks--and therefore much too soon to be drawing conclusions for most
cancers, the occurrence of which will increase over time. However, the early
increase in myeloma cases is quite remarkable and suggests a particular
susceptibility to the exposures at 9/11 sites.</span></p>

<p class="MsoPlainText"><span style="font-size:12.0pt;font-family:&quot;Times New Roman&quot;,&quot;serif&quot;">The
specific chemical identified by the Zadroga Act reviewers (6 months ago) was
1-3 butadiene, a chemical linked to rubbers and other&nbsp; fumes present at the 9/11 sites. &nbsp;The chemical 1-3 butadiene is metabolized in
the body via an epoxy mechanism. A study which I published in 2009 (</span><a href="http://myeloma.org/pdfs/2009%20Leukemia-%20Genetic%20polymorphisms%20of%20EPHX1,%20Gsk3b,%20TNFSF8.pdf"><span style="font-size:12.0pt;font-family:&quot;Times New Roman&quot;,&quot;serif&quot;">Leukemia article
on DNA SNP</span></a><span style="font-size:12.0pt;font-family:&quot;Times New Roman&quot;,&quot;serif&quot;">)
showed that myeloma patients are more likely to have a defect in this epoxy
metabolism, and, therefore, are potentially more susceptible to the toxic
effects.</span></p>

<p class="MsoPlainText"><span style="font-family: 'Times New Roman', serif; font-size: 12pt;">So
it seems that a story is coming together linking exposure, susceptibility, and
early onset of myeloma in the 9/11 setting. More studies and follow-ups are
needed, but these findings are plausible and satisfy elements of what are
called the "Bradford Hill Criteria," used to link toxic exposures and the
development of cancer such as myeloma. There is already "proof of principle"
that several toxic chemicals can cause myeloma, including pesticides, solvents,
and chemicals such as 1-3 butadiene.</span></p>

<p class="MsoPlainText"><span style="font-family: 'Times New Roman', serif; font-size: 12pt;">With
this knowledge, there is now an opportunity for early screening to diagnose any
case as soon as possible and look toward even curative intervention.</span><span style="font-family: 'Times New Roman', serif; font-size: 12pt;">&nbsp; </span><span style="font-family: 'Times New Roman', serif; font-size: 12pt;">Every cloud has a silver lining--in this case,
the ability to understand the process and intervene early.</span></p>]]>
        
    </content>
</entry>

<entry>
    <title>Retiring Support Group Leader Andy Lebkuecher Shares Wisdom and Gratitude   </title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2013/01/retiring-support-group-leader-andy-lebkuecher-shares-wisdom-and-gratitude.html" />
    <id>tag:myeloma.org,2013:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.660024</id>

    <published>2013-01-09T19:38:39Z</published>
    <updated>2013-01-09T19:51:48Z</updated>

    <summary><![CDATA[To my dear friends,As I set to retire on January 31st I can only tell you how fulfilling this endeavor has been for me and how wonderful it has been sharing this time with all of you.&nbsp;I thank you for&nbsp;welcoming...]]></summary>
    <author>
        <name>Andy Lebkuecher</name>
        
    </author>
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<p class="MsoNormal"><span style="color:black">To my dear friends,</span></p><img alt="andyl.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/andyl.jpg" width="90" height="118" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p class="MsoNormal"><span style="color: black; font-family: Verdana, sans-serif; font-size: 10pt;">As I set to retire on January 31</span><sup style="color: black; font-family: Verdana, sans-serif;">st</sup><span style="color: black; font-family: Verdana, sans-serif; font-size: 10pt;"> I
can only tell you how fulfilling this endeavor has been for me and how
wonderful it has been sharing this time with all of you.&nbsp;I thank you for&nbsp;</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;;color:black">welcoming me to your meetings and am
grateful for how much you taught me over the years as I visited you or met many
of you at a Patient and Family Seminar, Regional Community Workshops or other
places in my travels.<o:p></o:p></span></p>

<p class="MsoNormal"><span style="color:black">&nbsp;</span><span style="color: black; font-family: Verdana, sans-serif; font-size: 10pt;">More than eight years ago Susie Novis and Dr. Brian Durie gave me
the opportunity to carry my wife Cathy's legacy forward and meet and assist the
most wonderful people in the world, the multiple myeloma support group leaders,
patients and caregivers. That period is coming to an end.&nbsp;It saddens me
deeply, but life goes on. I will miss all of you and the wonderful IMF staff I
have worked with over the years.</span></p>

<p class="MsoNormal"><span style="color: black; font-family: Verdana, sans-serif; font-size: 10pt;">My new wife, Juanita, and I will now be able to spend more time
together, though I plan to find something to do that will fill some of my time
(Juanita's "honey-do-list"?).&nbsp;I have thought about volunteering at a local
hospital or other institution.&nbsp;God will guide me as he's done all my life.</span></p>

<p class="MsoNormal"><span style="color: black; font-family: Verdana, sans-serif; font-size: 10pt;">Leaders,&nbsp;please do not forget that educating and assisting
the patients and caregivers is, in my opinion, the most important thing we do. Please
feel free to contact any time you think I may be able to assist you in any way.</span></p>

<p class="MsoNormal"><span style="color: black; font-family: Verdana, sans-serif; font-size: 10pt;">Last but certainly not least, please be as gracious to Anne
(Pacowta), Nancy (Bruno) and Sue (Enright) as you were to me as they embark on
their journey with you.</span></p>

<p class="MsoNormal"><span style="color: black; font-family: Verdana, sans-serif; font-size: 10pt;">Thank you and God Bless,</span></p>

<span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;;mso-fareast-font-family:
Calibri;mso-fareast-theme-font:minor-latin;mso-bidi-font-family:&quot;Times New Roman&quot;;
color:black;mso-ansi-language:EN-US;mso-fareast-language:EN-US;mso-bidi-language:
AR-SA">Andy Lebkuecher</span>]]>
        
    </content>
</entry>

<entry>
    <title>SECRETS OF LONG LIFE: ARE COOKIES OKAY AFTER ALL?</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2012/11/secrets-of-long-life-are-cookies-okay-after-all.html" />
    <id>tag:myeloma.org,2012:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.659996</id>

    <published>2012-11-15T00:50:23Z</published>
    <updated>2012-11-15T01:07:58Z</updated>

    <summary>As I paged through the second edition of Dan Buettner&apos;s &quot;The Blue Zones,&quot; pondering the benefits of goat&apos;s milk, beans, garden vegetables and the like, I suddenly noticed a sentence with the word &quot;cookies&quot; in it! His personal interviews with...</summary>
    <author>
        <name>Brian G.M. Durie, MD</name>
        <uri>http://myeloma.org/ArticlePage.action?tabId=12&amp;menuId=55&amp;articleId=267&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=55&amp;parentIndexPageId=29&amp;parentCategoryId=93</uri>
    </author>
    
        <category term="Dr. Durie&apos;s Blogs" scheme="http://www.sixapart.com/ns/types#category" />
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="durieblog_app.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/durieblog_app.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p>As  I paged through the second edition of Dan Buettner's "<a href="http://www.bluezones.com/">The  Blue Zones</a>," pondering the benefits of goat's milk, beans, garden  vegetables and the like, I suddenly noticed a sentence with the word "cookies"  in it! His personal interviews with the centenarians from the Sardinian  mountain regions were most revealing and interesting. Before heading off to  visit the family mountaintop pasture, Dan "downed a dozen cookies with a few  glasses of wine" with Tonino, the 75-year-old son of a centenarian. It turns  out that "<a href="http://www.sardegna.com/en/blog/christmas-sardinia-sweet-papassini/">papassini</a>," Sardinian cookies made  with raisins, almonds, and jam from cooked red wine (saba), are very popular,  especially at festivals and during holiday seasons. So right before  Thanksgiving and the Christmas/New Year season, I learn that cookies may be  okay after all! The <a href="http://lsheryl.blogspot.com/2007/10/dolci-sardi-papassini.html">recipe for papassini</a> includes almonds (or walnuts), golden  raisins, flour, eggs, vanilla powder, vegetable shortening, plus whole milk.</p>
<p>So  do Sardinians live a long life despite eating cookies or are cookies actually  part of the magic formula for life beyond 100 years?&nbsp; Maybe, if they didn't eat cookies they could  live to be 150 years? At this point, I am thinking that 100 years seem  fine.&nbsp; But, as I focused in on the  individual stories of centenarians from "The Blue Zones" in Sardinia, Okinawa,  California, Costa Rica, and the island of Ikaria in Greece, I appreciated the  great diversity in factors contributing to long life. With regard to food,  there are both similarities and differences. The major common feature is  reliance upon a lean, plant-based diet. Herbal and medicinal teas are common. Red  wine (Cannonau or <a href="http://en.wikipedia.org/wiki/Grenache">Grenache</a>) high in flavonoids  is popular in Sardinia and Ikaria.&nbsp; Fresh goat's milk and grass-fed sheep cheeses are also popular in both these blue  zones. The high omega-3 fatty acids in these products may be especially  important since fish is eaten, but is not a consistent staple across the blue  zones.&nbsp; There is liberal use of olive oil  as well as frequent use of pork lard in cooking.&nbsp; Of note, eggs often accompany beans, rice,  and tortillas. Breads are whole grain.&nbsp;  Both sweet and traditional potatoes are used.&nbsp; Meat-eating is definitely low, and is  restricted mainly to pork, with less frequent beef reserved for holidays and  festivals.</p>
<p>But  it turns out that many key features of blue zones are not food related.&nbsp; It is important to realize that "The Blue  Zones" are not idyllic paradises with individuals focused on their "best diet."&nbsp; These centenarians, by and large, have  endured many hardships in their lives and eaten what is available: often not  enough.&nbsp; Even when they have enough food  in Okinawa, the centenarians stop eating when they are 80% full.&nbsp; These are tough, decisive people doing their  best to survive. There is an underlying faith that "God will provide" despite  precarious circumstances. There is freedom from the financial and social  pressures of modern society.&nbsp; Elders are  revered within the family and community. These are not "me" societies: it is all  about the extended family. Time and deadlines are not important. Naps are okay  and part of the pattern of life.</p>
<p>Dan  Buettner and his diverse collection of experts have tried very hard to sort out  the dietary, genetic, and social factors that can lead to long life. In Costa  Rica, the centenarians are closely linked to the Chorotega Indians, but there  may still be genetic diversity and strength from what locals call "mixed blood"  in this blue zone.&nbsp; Ultimately, the  causes of longevity are clearly multifactorial.</p>
<p>And  so, I came back to my starting question: what about the cookies? As I turned to  page 238, I spotted another sentence with cookies in it: this time <a href="http://allrecipes.com/recipe/italian-anisette-cookies/">anisette  cookies</a>.&nbsp; It turns out that, in Ikaria,  they also love cookies, in this case, anisette cookies,  which are remarkably similar to "papassini," using almond extract instead of  crushed almonds.</p>
<p>So  my final take-away is to rely on what Dan Buettner's team calls "Vitamin S" as  a magic ingredient.&nbsp; In this case, S is  for Smile!&nbsp; Centenarians and the rest of  us, if we want to be like them, need to be happy, sociable, welcoming people  always ready with a smile. If that smile, from time to time, combines with  cookies and red wine, this can be a good thing!</p>
]]>
        
    </content>
</entry>

<entry>
    <title>The Island Where People Forget to Die: Is Eating &quot;Real Food&quot; the Reason?</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2012/10/the-island-where-people-forget-to-die-is-eating-real-food-the-reason.html" />
    <id>tag:myeloma.org,2012:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.659995</id>

    <published>2012-10-29T23:04:56Z</published>
    <updated>2012-10-29T23:20:06Z</updated>

    <summary>In the October 28, 2012 issue of the New York Times Sunday Magazine, Dan Buettner discusses &quot;The Blue Zones&quot;: places in the world where an unexpectedly high percentage of people live to be over 100 years old (or close). Dan...</summary>
    <author>
        <name>Brian G.M. Durie, MD</name>
        <uri>http://myeloma.org/ArticlePage.action?tabId=12&amp;menuId=55&amp;articleId=267&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=55&amp;parentIndexPageId=29&amp;parentCategoryId=93</uri>
    </author>
    
        <category term="Dr. Durie&apos;s Blogs" scheme="http://www.sixapart.com/ns/types#category" />
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="durieblog_app.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/durieblog_app.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p>In the <a href="http://www.nytimes.com/2012/10/28/magazine/the-island-where-people-forget-to-die.html?hp">October 28, 2012 issue of the New York Times Sunday Magazine</a>, Dan Buettner discusses "The Blue Zones": places in the world where an unexpectedly high percentage of people live to be over 100 years old (or
close). Dan has a <a href="http://www.barnesandnoble.com/w/blue-zones-dan-buettner/1100480323">newly
updated book</a> out on this topic, but the focus of the New York Times article is the story of a Greek-born war veteran who moved to the U.S. and, in his 60s, developed lung cancer (presumed terminal). Expecting to die very soon, he returned to his native island, Ikaria, a Greek island 30 miles off the west coast of Turkey. Now, 35 years later and approximately 100 years old, he is cancer free and living an active life on Ikaria.</p>

<p>The question is why?</p>

<p>To come up with an answer, Dan Buettner has zeroed in on a "Blue Zone," which is a cluster of villages high in the mountains of Nuoro province in Sardinia, which contains the highest concentration of men over age 100
anywhere in the world.</p>

<p>He has recruited a team of experts, including Dr. Gianni Pes (University of Sassari in Italy) and Dr. Michel Poulain, a Belgian demographer, to help assess and validate if "Blue Zone" residents are really living longer than expected and why. So it is possible to compare and contrast the diet and lifestyle of residents of Ikaria, including Stamatis Moraitis, the long-lived cancer survivor, with centenarians from Sardinia and the other "Blue Zone" regions.</p>

<p>A key common feature is the local variations on the "Mediterranean type diet." The residents of Ikaria drink a popular "mountain tea" made from dried herbs such as marjoram, sage, mint (fliskouni), rosemary and dandelion. Local honey is widely used, and old people start their day with a spoonful of honey.</p>

<p>The menu in Ikaria include goat's milk, two-to-four glasses of local red wine daily, lentils, garbanzos, potatoes, fennel and seasonal vegetables from the garden. Residents also enjoy fish three times each week and small portions of larded pork from the family pig. There is generous use of olive oil with meals, plus local sourdough bread made with stone-ground wheat.</p>

<p>So there you have it, "Mediterranean Real Food": but there is also what they do not eat! Very little refined sugar and white flour; no sodas. All of this is remarkably like the <a href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2012/10/follow-up-tips-on-how-to-eat-real-food-maybe-there-are-some-cookies-you-can-eat.html">"Real Food"</a> approach we have been discussing in recent weeks.</p>

<p>Asked why she lived past 90 years, an old lady on Ikaria said it was the clean air and wine. A 101-year-old woman just shrugged and said, "We just forget to die."</p>

<p>There may be a lot of truth in this. The island residents do not track time (no clocks), work in their gardens, socialize, drink wine, have naps and are happy to wake up each day. So, although food is definitely important, the impact of the whole lifestyle cannot be ignored.</p>

<p>I have the impression that rushing to the gym eating an energy bar is not going to replicate the long life on Ikaria no matter how much "Real Food" we add in. We need true lifestyle changes, plus every effort to eat as best we can!</p>]]>
        
    </content>
</entry>

<entry>
    <title>The IMF at 22: How Far We&apos;ve Come, How Far We Still Have To Go</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2012/10/the-imf-at-22-how-far-weve-come-how-far-we-still-have-to-go.html" />
    <id>tag:myeloma.org,2012:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.659994</id>

    <published>2012-10-23T01:46:20Z</published>
    <updated>2012-10-23T02:09:22Z</updated>

    <summary>A lawn chair, an old coffee table, an IBM typewriter, a ream of paper, and three people with very different backgrounds: that was the checklist of assets and experience that the International Myeloma Foundation had when it was born 22...</summary>
    <author>
        <name>Susie Novis</name>
        <uri>http://www.myeloma.org</uri>
    </author>
    
        <category term="Susie Novis Blogs" scheme="http://www.sixapart.com/ns/types#category" />
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="susieblog_app.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/susieblog_app.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p>A lawn chair, an old coffee table, an IBM typewriter, a ream of paper, and three people with very different backgrounds: that was the checklist of assets and experience that the International Myeloma Foundation had when it was born 22 years ago. Every day, no matter our triumphs or tragedies, I usually have a
moment reflecting on where we began.</p>

<p>Comparing the IMF of today to the time of our founding, it is remarkable to me how far we've come...and how far we still have to go. Think of the maturing process of a young 22-year-old; how far he or she has developed since birth and yet still unsure of what the future will hold. That is how I feel about the IMF.</p>

<p>Like an infant, in our early days we were happy to have achieved something, anything. Following <b><a href="http://myeloma.org/ArticlePage.action?tabId=12&amp;amp;menuId=54&amp;amp;articleId=1396&amp;amp;aTab=-4">Brian Novis</a>'s</b> diagnosis of myeloma, we had little idea of what lay ahead of us and lived day-to-day, thankful for every good one and knowing that they would become fewer sooner rather than later. Brian immediately understood that the main thing missing was information: information that patients could use and, sadly, information that most doctors and
researchers didn't have.</p>

<p>As the idea of the IMF began to gel, we had few goals but great ambition. The first important achievement was the organization of the first international conference of myeloma experts. This meeting of 40 experts sharing ideas has
evolved into a biannual international conference attracting thousands of clinicians and researchers. Additionally, since that time, the topic of myeloma has gone from being a peripheral concern at the annual meeting of the American
Society of Hematology (ASH) to a highly anticipated forum and megaphone about the advances in myeloma treatment and research for thousands of doctors and researchers, and hundreds of thousands of patients and caregivers from every part of the globe.</p>

<p>The IMF seized on this opportunity to form a board of Scientific Advisors who, in 2001, met to publish the first ever management guidelines for myeloma. As many long-time IMFers well know, this initiative led to the creation of the <b><a href="http://myeloma.org/PortalPage.action?tabId=12&amp;menuId=312&amp;portalPageId=8">International Myeloma Working Group (IMWG)</a></b>. This collection of internationally recognized experts is now the source of guidance and information for all with an interest in myeloma. We have now hosted three annual meetings of the IMWG, which has produced numerous management guidelines covering every facet of myeloma treatment.</p>

<p>Because of the achievements, clinicians have immediate, timely access to the best, most recent information to provide patients everywhere the best care possible. But that doesn't mean everyone has access to ideas yet.</p>

<p>The central idea that grew out of those early days was the value and importance of patient education. After attending that first clinical conference I began asking, "Why don't we have these kinds of gatherings for patients?" It had never happened before, so initially there wasn't much interest. But we persevered and held the first ever--for any disease group anywhere--<b><a href="http://myeloma.org/EventIndexPage.action?tabId=7&amp;menuId=111&amp;queryPageId=4&amp;parentTabId=7&amp;parentMenuItemId=111&amp;parentLinkId=0&amp;parentNuggetId=0">Patient &amp; Family Seminar</a></b> in 1993. Since that time we have held hundreds of patient education meetings all around the world. This year alone we have hosted or co-hosted more than 45
patient meetings in 17 nations.</p>

<p>Also in 1993, we produced our first info packs, arguably the best information available for myeloma patients everywhere. In the early days we were busy at the copy machine churning out as many as we could afford. Today we produce more than 100 patient education booklets in at least 30 languages that are free to anyone who
asks.</p>

<p>Looking back, we never could have imagined in 1990 the scope and range of programs that
the IMF was capable of producing:</p>
<ul>
  <li>A Hotline that takes thousands of calls per
    year, professionally staffed, and for most who call, the first optimistic words they hear about their myeloma diagnosis.</li>
    <li>An advocacy program that voices the concerns and
  needs of myeloma patients to policymakers.</li>
  <li>Research grants given to the best young and
experienced minds in the field of myeloma.</li>
</ul>
<p>In 22 years, the IMF is a mature, ever-growing organization that constantly seeks the input and direction from our members so, if there is a need, we do all we can to address it.</p>

<p>Over the years, I have been struck by the common hopes and fears of myeloma patients and caregivers everywhere. We all have simple, yet invaluable desires: to see our children graduate from school, to hold our grandchildren, to celebrate that important anniversary with our loved ones, to laugh with our friends, to hold hands on a peaceful walk in the woods. And in the simplicity of these desires, you experience what the core mission of the IMF is. We are here to serve every
individual who has been touched by myeloma.</p>

<p>Thanks to advances in medicine and the treatment, especially within the past 14 years, myeloma patients are living significantly longer with a vastly improved quality of life. We can envision a day when myeloma will become a chronic disease, something that Brian could never conceive.</p>

<p>In 2002, I was honored to testify before the U.S. Senate on behalf of all cancer patients to advocate for funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI). I described to the senators a situation that is far too familiar to too many of us: "Brian's doctor said he had three to five years to live. Our family and friends hoped and prayed that he was wrong, that we would be able to raise a family and have a long and happy life together. We were wrong--the doctor was right. Brian died in 1992, just four years after his diagnosis at the age of 37. Our life together, however brief, was happy. And even though we never had children we did create a family. Our family became the International Myeloma Foundation. A family
comprised of patients, family members, caregivers, and friends."</p>

<p>Much like a parent who nervously, but confidently, anticipates a productive life for their 22-year-old child, I am confident, not nervous, that as our 22-year-old idea continues to mature we will make significant contributions with our core mission and programs.</p>

<p>Looking back on the past 22 years, I realize that together we have created so much more than a family. We have helped create a loving and caring community. A community of hundreds and thousands that can
trace its birth to a lawn chair, a coffee table, an IBM typewriter, a ream of paper, and three people with very different backgrounds.</p>]]>
        
    </content>
</entry>

<entry>
    <title>Support Group Leaders Wear Their Big Hearts and Hometown Pride on Their Sleeves</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2012/10/support-group-leaders-wear-their-big-hearts-and-hometown-pride-on-their-sleeves.html" />
    <id>tag:myeloma.org,2012:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.659993</id>

    <published>2012-10-23T01:19:49Z</published>
    <updated>2012-10-23T01:41:09Z</updated>

    <summary><![CDATA[My life was deeply touched this fall by three special, hardworking couples:&nbsp;Karl and Lorraine Vollstedt, Howard and Teresa Martinson, and Harold and Sue VanDuyn.&nbsp;Each went out of their way to welcome me into their local myeloma support group community. With...]]></summary>
    <author>
        <name>Pat Killingsworth</name>
        
    </author>
    
        <category term="Patient Perspectives" scheme="http://www.sixapart.com/ns/types#category" />
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="pat_blog.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/pat_blog.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p>My life was deeply touched this fall by three special, hardworking couples:&nbsp;Karl and Lorraine Vollstedt, Howard and Teresa Martinson, and Harold and Sue VanDuyn.&nbsp;Each went out of their way to welcome me into
their local myeloma support group community.</p>
<p>With the help of myeloma survivor Barb Davis, Karl and Lorraine are co-leaders of the Stillwater, Minnesota Multiple Myeloma Support Group. I met them when I attended my first ever support group meeting five years ago.</p><p>I am fond of telling anyone who will listen that the education I received&mdash;and the friendships I made there&mdash;helped save my life.</p><p>After a number of years, Karl is still alive and kicking. Myeloma and advancing years have taken their toll on Karl. And Lorraine recently had both knees replaced, along with a painful foot surgery. But you wouldn't know it by talking with them&mdash;two of the most positive, upbeat people I have ever met</p><p>Lorraine was kind enough to invite me to stay with them during my recent visit north.&nbsp;I was scheduled to speak to a myeloma support group in Minneapolis, but I set up my schedule to allow me to spend a couple extra days with Karl.</p><p>We drove into the city for a tour of Target Field, the new Minnesota Twins'
ballpark. We visited a homeless center there, too; Karl is a member of their board of directors.</p><p>And speaking of homeless shelters, my new friends and support group leaders, Howard and Teresa, in Spokane, Washington, also help to run a shelter in nearby Coeur d'Alene, Idaho.</p><p>What?&nbsp; Like dealing with their own cancer and helping other patients and caregivers&mdash;doesn't keep them busy enough?&nbsp;Amazing!</p><p>I met Howard and Teresa&mdash;and our third couple, Harold and Sue&mdash;in Dallas at the IMF's Support Group Summit.&nbsp;Harold had just introduced himself when he started bragging-up their hometown of Grand Rapids, Michigan.&nbsp;They invited me up to speak to their group and I eagerly accepted.&nbsp; Even thought Grand
Rapids is the state's second largest city, there wasn't a support group for myeloma patients anywhere to be found nearby.&nbsp;So of course, this energetic couple started one ten months ago.</p><p>With the help of the IMF, the new, fledgling group is already amazingly successful.&nbsp; Over 40 patients, caregivers and family members somehow squeezed into a room in the world famous Gilda's Club to hear my story on Monday.&nbsp;And Harold was right!&nbsp;Grand Rapids was a very impressive city, with new medical and research buildings rising everywhere.</p><p>But it's the people that make Stillwater, Spokane and Grand Rapids so special. Everyone I met was warm and helpful.</p><p>Harold only recently recovered from a stem cell transplant, and some of his counts haven't recovered.&nbsp; But like Karl and Lorraine, you wouldn't know it!&nbsp; Harold may be the patient face of the new group, but Sue pulls everything together.&nbsp; She's the organizer.</p><p>Isn't that always the case?&nbsp; Behind most every helpful myeloma survivor, there is a dutiful caregiver that helps monitor their medications, gets them to
appointments on time and helps emotionally hold things together.</p><p>At breakfast Tuesday, Harold started rattling-off examples of all the new myeloma friends the couple had made since starting their group.&nbsp; Right
back at you, Harold!&nbsp; I hope I make the list.&nbsp; I can't imagine having better friends than Karl, Lorraine, Howard, Teresa, Harold and Sue!</p><p>Three exceptional patient/caregiver teams and support group leaders.&nbsp; Six exceptional friends.</p><p>Funny how a cancer like multiple myeloma can bring out the best in people, isn't it?</p><p>Feel good and keep smiling!</p><p>Pat</p>]]>
        
    </content>
</entry>

<entry>
    <title>Follow-Up Tips On How To Eat &quot;Real Food&quot;: Maybe There Are Some Cookies You Can Eat!</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2012/10/follow-up-tips-on-how-to-eat-real-food-maybe-there-are-some-cookies-you-can-eat.html" />
    <id>tag:myeloma.org,2012:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.659992</id>

    <published>2012-10-18T17:48:40Z</published>
    <updated>2012-10-19T15:16:50Z</updated>

    <summary> After the teleconference on &quot;10 Steps To Better Nutrition,&quot; numerous comments, questions, and helpful suggestions came into the International Myeloma Foundation (IMF). It is clear that many details about food and drinks are of great interest. So I will...</summary>
    <author>
        <name>Brian G.M. Durie, MD</name>
        <uri>http://myeloma.org/ArticlePage.action?tabId=12&amp;menuId=55&amp;articleId=267&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=55&amp;parentIndexPageId=29&amp;parentCategoryId=93</uri>
    </author>
    
        <category term="Dr. Durie&apos;s Blogs" scheme="http://www.sixapart.com/ns/types#category" />
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="durieblog_app.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/durieblog_app.jpg" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" height="140" width="300" /> 
<p align="left">After the teleconference on "<a href="http://myeloma.org/ArticlePage.action?tabId=0&amp;menuId=0&amp;articleId=3799&amp;aTab=-1"><b>10 Steps To Better Nutrition</b></a>," numerous comments, questions, and helpful suggestions came into the International Myeloma Foundation (IMF). It is clear that many details about food and drinks are of great interest. So I will start with some of the recurring themes.</p>
<p><strong>Are some cookies okay?</strong></p>
<p>  The answer is yes! It is important to understand about acrylamide and some other aspects of cookies. Let me again refer you to the <a href="http://www.mayoclinic.com/health/acrylamide/MY00062">Mayo Clinic nutrition article</a> plus the National Cancer Institute's "<a href="http://www.cancer.gov/cancertopics/factsheet/Risk/acrylamide-in-food">Fact Sheet: Acrylamide in Food and Cancer Risk</a>." <a href="http://en.wikipedia.org/wiki/Acrylamide">Acrylamide</a> is a toxic chemical which is produced by high temperature cooking (above 248°F [120°C]) when asparagine, an amino acid (in proteins), binds with sugars in whatever is being cooked. So keep temperatures low and avoid excessive browning or burning: these are key to keep acrylamide low. Preparative pre-cooking can also be important, such as the use of coating with olive oil before cooking meat. Likewise blanching potatoes before frying can be helpful in reducing acrylamide. So what about cookies? It is definitely possible to have cookies with low acrylamide. For example, lightly baked, fully organic oatmeal cookies or shortbread cookies can be options. Obviously, one needs to separately consider the sugar content and calories: nothing is simple these days!</p>
<p>Talking about sugars, let me switch to the number one area of questions and comments:</p>
<p><strong>What about sodas? Are there some safe options there?</strong></p>
<p>  On the teleconference call on <a href="http://myeloma.org/pdfs/10_Steps_To_Better_Nutrition_10-11-12.pdf">Thursday, October 11th</a>, I cautioned that quite a number of processed and packaged foods and drinks can contain toxic chemicals, hormones, antibiotics, and some can even contain dangerous fungus or bacteria.</p><p><br />
  So what can one do to stay healthy? My strong recommendation is to eat "<a href="http://www.barnesandnoble.com/w/real-food-nina-planck/1100390747"><em>Real Food</em></a>" and carefully selected drinks. I also recommended that you stay above the fray of the often confusing and controversial discussions about which chemical or hormone is toxic or not. Just do your best to avoid chemicals or processes which are in dispute and potentially dangerous. Read labels and make a commitment to maximize the amount of "Real Food" in your diet. If you can't go to a Farmer's Market or don't have one close by, check at your local store- many are now stocking organic food (<a href="http://www.time.com/time/magazine/article/0,9171,2126086,00.html">Time Magazine, October 2012</a>). Another option is to see if fresh, local, organic produce can be delivered (<a href="http://www.freshdirect.com/about/index.jsp;jsessionid=wGCwQQFhQCQ91DQGJZ6g9Cfynz2kkSDrtT7RD2pQrpKDyLLT4LFk!-1622409460!865384865?siteAccessPage=aboutus&amp;successPage=/index.jsp">Fresh Direct</a>) or perhaps friends or neighbors can help.</p>
<p><strong>What is best with regard to sodas?</strong></p>
<p>  The main point is to do your best to avoid:</p>
<ul>
 <li>Artificial sweeteners: <a href="http://en.wikipedia.org/wiki/Sucralose">Sucralose</a> (Splenda&reg;) and <a href="http://en.wikipedia.org/wiki/Aspartame">Aspartame</a> (Nutrasweet&reg; and Equal&reg;</li>
 <li>Caramel coloring chemicals: <a href="http://en.wikipedia.org/wiki/4-methylimidazole">4-methylimidazole</a> (4MI)</li>
 <li>Excess sugar, especially <a href="http://en.wikipedia.org/wiki/High_fructose_corn_syrup">high-fructose corn syrup</a></li>
 <li>Also, <a href="http://en.wikipedia.org/wiki/Bisphenol_A">bisphenol A</a> from plastics and phosphate preservatives</li>
</ul>
<p>A recent editorial in the <a href="http://myeloma.org/ArticlePage.action?tabId=0&amp;menuId=0&amp;articleId=3799&amp;aTab=-1">New England Journal of Medicine</a> (this and another article are linked as references from the teleconference page) highlights the need to restrict soda intake, because of the high-fructose corn syrup, to reduce the risk of developing obesity, diabetes, and/or a range of other ailments.</p>
<p>A useful website source is "<a href="http://www.rodale.com/">Rodale</a>" (Where Health Meets Life), which highlights 8 healthy sodas. <a href="http://www.rodale.com/healthy-soda-0">Go to the site to get full details.</a> The sodas and healthy drinks are:</p>
<ul>
 <li>Fizzy Lizzy, a carbonated fruit juice drink</li>
 <li>Reed's Light extra ginger brew</li>
 <li>Virgil's Root Beer</li>
 <li>Bionade, which comes in a range of fruit flavors</li>
 <li>Oogave, a certified organic soda with multiple flavors</li>
 <li>Kombucha fermented tea</li>
 <li>Hot Lips cranberry or pear soda</li>
 <li>Steaz sparkling green tea</li>
</ul>
<p>These are options if you feel like having a soda or a healthy drink! Another option, in response to a question posed, is simply to add some natural pomegranate juice into sparkling water, which can produce quite a delicious drink. <a href="http://en.wikipedia.org/wiki/Pomegranate">Pomegranate</a> is an ancient and healthy fruit, which contains many active ingredients, such as antioxidants and polyphenols. Claims have been made that it is helpful for a variety of medical conditions and have been taken seriously enough to lead to several ongoing trials. Pomegranate is a good fruit- just how good, we don't know yet!</p>
<p>So this is perhaps enough information for now. I will be back again soon to discuss additional topics of particular interest or concern. In the meantime, don't forget to read the labels!</p>




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<entry>
    <title>POMALIDOMIDE UPDATE</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2012/10/pomalidomide-update.html" />
    <id>tag:myeloma.org,2012:/MtEntryPage.action?source=/imf_blogs/myeloma_voices//22.659991</id>

    <published>2012-10-08T18:29:35Z</published>
    <updated>2012-10-08T18:30:48Z</updated>

    <summary><![CDATA[The US Food and Drug Administration (FDA) has cancelled the planned November advisory committee (ODAC) meeting for Celgene's pomalidomide application.&nbsp; Celgene, in a press release, indicated that the pomalidomide application is continuing, which means that a decision with regard to...]]></summary>
    <author>
        <name>Brian G.M. Durie, MD</name>
        <uri>http://myeloma.org/ArticlePage.action?tabId=12&amp;menuId=55&amp;articleId=267&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=55&amp;parentIndexPageId=29&amp;parentCategoryId=93</uri>
    </author>
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/">
        <![CDATA[<img alt="durieblog_app.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/durieblog_app.jpg" width="300" height="140" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p class="MsoNoSpacing" align="center" style="text-align: left;"><font style="font-size: 1.25em; ">The
US Food and Drug Administration (FDA) has cancelled the planned November
advisory committee (ODAC) meeting for Celgene's pomalidomide application.&nbsp; Celgene, in a press release, indicated that
the pomalidomide application is continuing, which means that a decision with
regard to pomalidomide is still expected on or before February 10, 2013.</font></p>

<p class="MsoNoSpacing"><font style="font-size: 1.25em; ">&nbsp;</font><span style="font-size: 1.25em; ">So
what does that cancellation mean?</span><span style="font-size: 1.25em; ">&nbsp;
</span><span style="font-size: 1.25em; ">Firstly, it is important to note that the FDA is not obliged to convene
an ODAC hearing and, in fact, only needs to have a hearing if there are
unresolved questions or concerns.</span><span style="font-size: 1.25em; ">&nbsp; </span><span style="font-size: 1.25em; ">Thus,
the first and dominant interpretation is that there are no outstanding issues
and that the FDA is on track to make a decision- most likely a positive
decision with regard to pomalidomide approval.</span><span style="font-size: 1.25em; ">&nbsp;
</span><span style="font-size: 1.25em; ">The alternate interpretation that the FDA would disapprove pomalidomide
without a formal ODAC hearing seems much less likely.</span></p>

<p class="MsoNoSpacing"><font style="font-size: 1.25em; ">&nbsp;</font><span style="font-size: 1.25em; ">Thus,
I am optimistic that pomalidomide will indeed be approved based upon "unmet
need" just as was the case recently for carfilzomib (Kyprolis</span><sup>®</sup><span style="font-size: 1.25em; ">).</span><span style="font-size: 1.25em; ">&nbsp; </span><span style="font-size: 1.25em; ">The ODAC hearing for carfilzomib may have
helped the FDA in considering pomalidomide in that the case for the "unmet
need" for new drugs to treat myeloma was very clearly and strongly articulated
during that hearing.</span></p>

<p class="MsoNoSpacing"><span style="font-size: 1.25em; line-height: 115%; ">So, let's keep our
fingers crossed for a positive outcome.</span></p>]]>
        
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