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    <title>Caregivers&apos; Journal</title>
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    <id>tag:myeloma.org,2011-01-11:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16</id>
    <updated>2011-12-08T16:50:11Z</updated>
    <subtitle>A blog to share what I&apos;ve learned about multiple myeloma and caregiving. And to learn more from others as well!</subtitle>
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<entry>
    <title>ARE YOU READY FOR SOME FOOTBALL? HOW ABOUT SOMETHING EVEN BETTER! ARE YOU READY FOR ASH?</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2011/12/are-you-ready-for-some-football-how-about-something-even-better-are-you-ready-for-ash.html" />
    <id>tag:myeloma.org,2011:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.659787</id>

    <published>2011-12-08T16:30:25Z</published>
    <updated>2011-12-08T16:50:11Z</updated>

    <summary>&quot;The American Society of Hematology (ASH) is the world&apos;s largest professional society concerned with the causes and treatments of blood disorders. The mission of the Society is to further the understanding, diagnosis, treatment, and prevention of disorders affecting the blood,...</summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    <category term="americansocietyofhematology" label="American Society of Hematology" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="ash" label="ASH" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="multiplemyeloma" label="multiple myeloma" scheme="http://www.sixapart.com/ns/types#tag" />
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        <![CDATA[<img alt="SanDiegoConventionCenter.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/SanDiegoConventionCenter.jpg" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" height="100" width="100" /><img alt="ASH2011symp_thumb.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/ASH2011symp_thumb.jpg" class="mt-image-right" style="float: right; margin: 0 0 20px 20px;" height="100" width="100" /><i>"The American Society of Hematology (ASH) is the world's largest professional society concerned with the causes and treatments of blood disorders. The mission of the Society is to further the understanding, diagnosis, treatment, and prevention of disorders affecting the blood, bone marrow, and the immunologic, hemostatic and vascular systems, by promoting research, clinical care, education, training, and advocacy in hematology."<br /></i><br /><br />Each year thousands of people from all over the world attend the ASH Annual Meeting to learn the latest and greatest information available. Of course, our main focus will be on multiple myeloma and the treatments in that "pipeline" for our future! <br /><br />Michael and I will be attending the 53rd American Society of Hematology Meetings from December 8 - 12, 2011. There will be many exciting oral and poster presentations for all of us to look forward to.<br /><br /><b>Please note in particular the following information, webcasts, and live presentations available on the IMF website (<a href="http://myeloma.org/">myeloma.org</a>) </b><br /><br /><b>Pre-ASH Highlights</b> - the IMF presents a special edition of <i>Citings</i>, our premier publication featuring the most up-to-date information on&nbsp;multiple myeloma&nbsp;treatment and diagnostics. This edition highlights presentations that will be made at ASH and the latest research on Freelite.<br /><br /><ul><li><a href="http://myeloma.org/pdfs/Citings-pre-ASH-Dec2011_b2web.pdf">Special Edition ASH 2011: Pre-ASH Highlights</a><br /><br /></li><li><a href="http://myeloma.org/pdfs/Citings-TBS-SpecEd2011_d1web.pdf">Special Edition: ASH 2011: Freelite® / Hevylite® Issue</a><br /></li></ul><br />The IMF is holding a <b>Free CME-Certified Symposium</b> on Friday, December 9 entitled: "Myeloma Questions and Controversies: New Developments in 2011 That Impact Diagnosis, Prognosis, and Treatment."<br /><br /><ul><li>If you would like to watch the Symposium LIVE as it happens, go to <a href="http://imfashprogram2011.myeloma.org/">http://imfashprogram2011.myeloma.org</a> at 6:30 PM Pacific time on December 9.</li></ul><br /><ul><li>After ASH, the video of the Symposium will be posted to the web, and you'll be able to watch it by going to <a href="http://ash2011symposium.myeloma.org/">http://ash2011symposium.myeloma.org</a>. (This link will not be live until after the meeting.)</li></ul><br /><b>IMF Journalists' Workshop LIVE webcast from ASH</b>: Monday, December 12, at 8:00 PM (Pacific). <a href="http://myeloma.org/ArticlePage.action?tabId=22&amp;menuId=164&amp;articleId=3563&amp;aTab=-1&amp;gParentType=link&amp;gParentId=6114&amp;parentIndexPageId=356">Details on webcast of Journalists' Workshop.</a><br /><br />The IMF will be posting over <b>90 webcasts taped at ASH</b> reporting on the current status of some of the most interesting research in myeloma. Please check back daily for postings.<br /><br /><b>We will also be blogging from ASH!</b> The IMF has invited patients and caregivers from across the country to attend the meeting, and they will be blogging daily. They include me, of course, Jack Aiello, Pat Killingsworth, Jim Omel and Cindy Ralston. And, if the spirit moves them, maybe more!<br /><br />As you can see, we've got a lot to be hopeful for in the world of myeloma research and treatments!<br /><br />All of this information is available at <a href="http://myeloma.org/">myeloma.org</a>. Look under "New &amp; Noteworthy" on the right side of the home screen. <br /><br />Please share this information and blog with anyone you know of that has an interest in myeloma.The more we learn the better we can communicate with our doctors! Knowledge is Power! Stay tuned for my next blog direct from ASH!<br /> <div><br /></div><div><br /></div>]]>
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<entry>
    <title>Patient Support Programs - Part 1</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2011/11/patient-support-programs.html" />
    <id>tag:myeloma.org,2011:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.659743</id>

    <published>2011-11-03T23:09:20Z</published>
    <updated>2011-11-03T23:54:21Z</updated>

    <summary> .blog { font-family: Arial, Helvetica, sans-serif; font-size: 12px; font-style: normal; line-height: normal; font-weight: normal; } As caregivers, one of the challenges we face is financial. Whether it&apos;s how to pay for this week&apos;s groceries, fuel, the mortgage, or how...</summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    <category term="amgen" label="Amgen" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="celgene" label="Celgene" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="cephalon" label="Cephalon" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="drugreimbursement" label="drug reimbursement" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="insurancecoverage" label="insurance coverage" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="internationalmyelomafoundation" label="International Myeloma Foundation" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="millenniumthetakedaoncologycompany" label="Millennium:The Takeda Oncology Company" scheme="http://www.sixapart.com/ns/types#tag" />
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<p class="blog"><img alt="robinpharmablog.png" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/robinpharmablog.png" class="mt-image-left" style="float: left; margin: 0pt 20px 20px 0pt;" height="171" width="198" />As caregivers, one of the challenges we face is financial. Whether it's how to pay for this week's groceries, fuel, the mortgage, or how to find assistance for treatment expenses, it can certainly be stressful. The good news<em>: there IS support for us</em>! &nbsp;&nbsp;In this blog, I will focus on support from pharmaceutical companies. My next blog will focus on resources you can contact for additional information and support.</p>
<p class="blog"><strong>Celgene Corporation<br />
</strong>The pharmaceutical company that developed FDA-approved myeloma therapies Thalomid and Revlimid has a dedicated website for their Patient Support Program: <a href="http://www.celgenepatientsupport.com/">http://www.celgenepatientsupport.com/</a> </p>
<p class="blog">Celgene Patient Support is a free service that helps patients and healthcare professionals navigate the challenges of reimbursement, providing information about co-pay assistance and access to Celgene therapies.</p>
<p class="blog">&nbsp;On their website, you will find information for</p>
<ul>
 <li class="blog">Understanding Insurance Coverage and Reimbursement - including Medicare, Medicaid, Veterans Benefits, and state pharmaceutical assistance programs</li>
 <li class="blog">Financial Resources - including Co-Pay Assistance Programs and Celgene Free Medication Program</li>
 <li class="blog">Prescription Process </li>
 <li class="blog">Tools and Resources</li>
</ul>
<p class="blog">You can also find your dedicated Celgene Patient Support Specialist by entering your zip code.</p>
<p class="blog">You will be assigned your own Celgene Patient Support Specialist who will work with you and your doctor's office to</p>
<ul>
 <li class="blog">Explain your benefits</li>
 <li class="blog">Facilitate prior authorization</li>
 <li class="blog">Assist with appeal and support after insurance denials</li>
 <li class="blog">Navigate your Medicare coverage</li>
 <li class="blog">Assess co-pay options</li>
 <li class="blog">Follow up on your prescription status</li>
 <li class="blog">Help you apply for the Celgene free medication program</li>
 <li class="blog">Guide you through Celgene products and restricted distribution programs</li>
</ul>
<p class="blog">For additional help and information, contact Celgene Patient Support at 1-800-931-8691 or check out their website: <a href="http://www.celgenepatientsupport.com/">http://www.celgenepatientsupport.com/</a></p>
<hr size="1">
<p class="blog"><strong>Millennium: The Takeda Oncology Company<br />
</strong>The pharmaceutical company that developed FDA-approved myeloma therapy VELCADE has a dedicated website for their VELCADE Reimbursement Assistance Program: <a href="http://www.velcade.com/PayingForTreatment.aspx">http://www.velcade.com/PayingForTreatment.aspx</a></p>
<p class="blog">Their goal is to help you get the treatment your doctor has prescribed, no matter your insurance or financial situation. VELCADE Reimbursement Assistance Program (VRAP) is available to patients, physicians, and caregivers to provide assistance regarding reimbursement issues related to the use of VELCADE. </p>
<p class="blog">On their website, you will find information for:</p>
<ul>
 <li class="blog">Insurance Coverage and Payment Resources</li>
 <li class="blog">Understanding the Coverage Process</li>
</ul>
<p class="blog">You can contact them at 1-866-VELCADE, option 2. Dedicated Case Managers are available from 8:00 a.m. to 8:00 p.m. (Eastern).</p>
<hr size="1">
<p class="blog"><strong>The International Myeloma Foundation</strong> is an excellent resource where you can access additional information on drug reimbursement assistance. Click here for details: <a href="http://reimbursement.myeloma.org/" target="_blank">http://reimbursement.myeloma.org</a></p>
<p class="blog">Here you will find reimbursement assistance information from</p>
<ul>
  <li class="blog">Amgen</li>
 <li class="blog">Cephalon</li>
 <li class="blog">Novartis</li>
 <li class="blog">Ortho Biotec</li>
 <li class="blog">AND MUCH MORE!</li>
</ul>
<p class="blog"><strong>Also, don't forget the IMF Hotline folks</strong>.</p>
<table border="0" cellpadding="6" width="90%">
  <tbody><tr>
    <td><div class="blog" align="center"><img src="http://myeloma.org/images/link_thumb_nail/staff_birns.jpg" alt="" height="118" width="90" /></div></td>
    <td><div class="blog" align="center"><img src="http://myeloma.org/images/link_thumb_nail/staff_klepetar.jpg" alt="" height="118" width="90" /></div></td>
    <td><div class="blog" align="center"><img src="http://myeloma.org/images/link_thumb_nail/staff_hewitt.jpg" alt="" height="118" width="90" /></div></td>
    <td><div class="blog" align="center"><img src="http://myeloma.org/images/link_thumb_nail/staff_webb.jpg" alt="" height="118" width="90" /></div></td>
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  <tr>
    <td><div class="blog" align="center">Debbie</div></td>
    <td><div class="blog" align="center">Missy</div></td>
    <td><div class="blog" align="center">Paul</div></td>
    <td><div class="blog" align="center">Judy</div></td>
  </tr>
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<p class="blog"><br />
  Debbie Birns, Missy Klepetar, Paul Hewitt and Judy Webb are "just a call away." The Hotline staff is here to answer your questions and provide support. Please contact them toll-free from 9:00 a.m. - 4:00 p.m. (Pacific)</p>
<p class="blog">1-800-452-2873 (CURE)</p>
<span class="blog"> 1-818-487-7455 outside of the US and Canada</span><span style="font-size:12.0pt;line-height:115%;font-family:&quot;Palatino Linotype&quot;,&quot;serif&quot;;
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<entry>
    <title>Prescription Translations</title>
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    <id>tag:myeloma.org,2011:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.659726</id>

    <published>2011-10-25T21:48:35Z</published>
    <updated>2011-10-25T21:57:27Z</updated>

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<![endif]--><span style="font-size: 11pt; line-height: 115%; font-family: &quot;Arial&quot;,&quot;sans-serif&quot;;">Wonder what that chicken scratch means on the prescription that the
doctor wrote out?<span style="mso-spacerun:yes">&nbsp; </span>Here are some of the
more frequently used abbreviations for terms commonly used in prescriptions
with their meanings:<br /><br /></span><img alt="prescripblog01.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/prescripblog01.jpg" class="mt-image-center" style="text-align: center; display: block; margin: 0 auto 20px;" height="428" width="600" /><!--[if gte mso 9]><xml>
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<p class="yiv21628357yiv1773145614msonormal" style="margin-top:0in;margin-right:
0in;margin-bottom:10.0pt;margin-left:0in"><b><span style="font-size:9.0pt;
font-family:&quot;Arial&quot;,&quot;sans-serif&quot;;color:black">Prescription abbreviations:</span></b><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;;color:black"> A </span><a href="http://www.medterms.com/script/main/art.asp?articlekey=11896" target="_blank"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;;
color:#0033CC">prescription</span></a><span style="font-size:9.0pt;font-family:
&quot;Arial&quot;,&quot;sans-serif&quot;;color:black">, is a physician's order for the preparation
and administration of a drug or device for a patient.</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"></span></p>

<p class="yiv21628357yiv1773145614msonormal" style="margin-top:0in;margin-right:
0in;margin-bottom:10.0pt;margin-left:0in"><span style="font-size:9.0pt;
font-family:&quot;Arial&quot;,&quot;sans-serif&quot;;color:black">What may be less well known is
that a prescription has several parts: </span><span style="font-size:10.0pt;
font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"></span></p>

<ul style="margin-top:0in" type="disc"><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l1 level1 lfo1;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">The
     superscription (or heading) with the symbol R or Rx which stands for the
     word Recipe, meaning (in Latin) to take;</span><span style="font-size:
     10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"> </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l1 level1 lfo1;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">The
     inscription which contains the names and quantities of the ingredients;</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"> </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l1 level1 lfo1;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">The
     subscription or directions for compounding the drug; and</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"> </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l1 level1 lfo1;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">The
     signature which is often preceded by the sign s. standing for signa, mark,
     giving the directions to be marked on the container.</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"></span></li></ul>

<p class="yiv21628357yiv1773145614msonormal" style="margin-top:0in;margin-right:
0in;margin-bottom:10.0pt;margin-left:0in"><span style="font-size:9.0pt;
font-family:&quot;Arial&quot;,&quot;sans-serif&quot;;color:black">You may see some chicken scrawl
marks on a prescription. For example, b.i.d. It means twice (two times) a day and
is an abbreviation for "bis in die" which in Latin means, not too
surprisingly, twice a day. It is one of a number of hallowed abbreviations of
Latin terms that have been traditionally used in prescriptions to specify the
frequency with which medicines should be taken. </span><span style="font-size:
10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"></span></p>

<p class="yiv21628357yiv1773145614msonormal" style="margin-top:0in;margin-right:
0in;margin-bottom:10.0pt;margin-left:0in"><span style="font-size:9.0pt;
font-family:&quot;Arial&quot;,&quot;sans-serif&quot;;color:black">Some of the abbreviations of
terms commonly used in prescriptions with their meanings are: </span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"></span></p>

<ul style="margin-top:0in" type="disc"><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;"><span style="mso-spacerun:yes"></span>a.c. = before meals (from "ante
     cibum," before meals) </span><span style="font-size:10.0pt;
     font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"></span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">ad
     lib: use as much as one desires (from "ad libitum")</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"> </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">b.i.d.
     = twice a day</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;">
     </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">caps
     = capsules</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;">
     </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">da
     or daw = dispense as written</span><span style="font-size:10.0pt;
     font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"> </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">g
     (or gm or GM) = gram</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;">
     </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">gtt
     = drops (from "guttae," drops)</span><span style="font-size:
     10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"> </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">h
     = hour</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"></span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">h.s.
     = at bedtime (from "hora somnia," at the time of sleep)</span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">mg
     = milligram</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;">
     </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">ml
     = milliliter</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;">
     </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">p.c.
     = after meals (from "post cibum," after meals) </span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"></span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">p.o.
     = by mouth, orally (from "per os," by mouth) </span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"></span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">p.r.n.
     = when necessary (from "pro re nata," for an occasion that has
     arisen, as circumstances require, as needed)</span><span style="font-size:
     10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"> </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">q.d.
     = once a day (from "quaque die," once a day)</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"> </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">q.i.d.
     = four times a day (from "quater in die," 4 times a day) </span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"></span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">q._h.:
     If a medicine is to be taken every so-many hours (from "quaque,"
     every and the "h" indicating the number of hours)</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"> </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">q.h.
     = every hour</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;">
     </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">q.2h.
     = every 2 hours</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;">
     </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">q.3h.
     = every 3 hours</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;">
     </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">q.4h.
     = every 4 hours</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;">
     </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">t.i.d.
     = three times a day (from "ter in die," 3 times a day)</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"> </span></li><li class="MsoNormal" style="color:black;line-height:normal;mso-list:l0 level1 lfo2;
     tab-stops:list .5in"><span style="font-size:9.0pt;font-family:&quot;Arial&quot;,&quot;sans-serif&quot;">ut
     dict. = as directed (from "ut dictum," as directed)</span><span style="font-size:10.0pt;font-family:&quot;Verdana&quot;,&quot;sans-serif&quot;"></span></li></ul>

<p class="yiv21628357yiv1773145614msonormal" style="margin-top:0in;margin-right:
0in;margin-bottom:10.0pt;margin-left:0in"><span style="font-size:9.0pt;
font-family:&quot;Arial&quot;,&quot;sans-serif&quot;;color:black">The word "prescription"
also comes from the Latin "praescriptus" and is made up of
"prae," before + "scribere," to write, so that prescription
meant "to write before." This reflected the historic fact that a prescription
had traditionally to be written <b>before</b> a drug could be prepared and then
administered to a patient. </span><span style="font-size:10.0pt;font-family:
&quot;Verdana&quot;,&quot;sans-serif&quot;"></span></p>

<p class="MsoNormal"><span style="font-size:10.0pt;line-height:115%;font-family:
&quot;Arial&quot;,&quot;sans-serif&quot;">So there you have it!<span style="mso-spacerun:yes">&nbsp;
</span>Now we just need to get the doctors to write a prescription so we can
read it!</span><span style=""></span></p><p class="MsoNormal"><img alt="prescripblog02.png" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/prescripblog02.png" class="mt-image-center" style="text-align: center; display: block; margin: 0 auto 20px;" height="208" width="256" /><br /><span style="mso-spacerun:yes"></span><span style="font-family:
Wingdings;mso-ascii-font-family:Calibri;mso-ascii-theme-font:minor-latin;
mso-hansi-font-family:Calibri;mso-hansi-theme-font:minor-latin;mso-char-type:
symbol;mso-symbol-font-family:Wingdings"><span style="mso-char-type:symbol;
mso-symbol-font-family:Wingdings"></span></span></p>

<br /><br /> ]]>
        
    </content>
</entry>

<entry>
    <title>Coping Tips for Caregivers: A to Z</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2011/04/coping-tips-for-caregivers-a-to-z.html" />
    <id>tag:myeloma.org,2011:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.467722</id>

    <published>2011-04-06T20:21:28Z</published>
    <updated>2011-04-06T20:24:42Z</updated>

    <summary>Always take care of yourself first. Who will handle all of your responsibilities if something happens to you? Be as patient as you can with yourself and your loved one. Contact self help centers and hospitals in your community to...</summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    <category term="caregiver" label="Caregiver" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="supportgroup" label="Support group" 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/robins_caregiver_journal/">
        <![CDATA[<p style="MARGIN-RIGHT: 8.25pt"><font face="Verdana"><span><strong><font size="3">A</font></strong>lways take care of yourself first. Who will handle all of your responsibilities if something happens to you? <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">B</font></span></b></font><font face="Verdana"><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">e as patient as you can with yourself and your loved one. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">C</font></span></b></font><font face="Verdana"><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">ontact self help centers and hospitals in your community to find resources in your area. Local newspapers may also advertise meetings and support groups in your community. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">D</font></span></b></font><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt"><font face="Verdana">etermine as soon as possible how finances will be handled and whether filing for disability insurance benefits or Social Security benefits is warranted. You may want to contact an accountant to help you. Legal matters such as an </font><span style="mso-bidi-font-weight: bold"><a href="http://heart.healthcentersonline.com/heartgeneral/advancedirectives.cfm"><span style="COLOR: black; TEXT-DECORATION: none; text-underline: none">advance directive</span></a></span><font face="Verdana"> should also be addressed, and a lawyer's services might prove useful. <br /><br /></font></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">E</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">ncourage your loved one to do as much as he or she can on his or her own.&nbsp;Don't baby your loved one too much and actually risk limiting his or her level of functioning. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">F</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">ind out everything you can about your loved one's condition and available treatments .<o:p></o:p></span></p>
<p style="MARGIN-RIGHT: 8.25pt"><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">G</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">ive yourself permission to take a break, to feel angry, scared or resentful, to grieve, cry, or reach out for help, or whatever you need to do - right when you need to do it. Even when you think you have grieved enough, adjusted enough or worried enough, these emotions can arise all over again. Caregiving is a continual process. Give yourself room to re-group every step of the way. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">H</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">ave the phone number of your loved one's physician by the phone at all times in case of an emergency. Also, find out in advance where the nearest hospital is that can handle an emergency, lists your loved one's physician as having hospital privileges and is covered by your loved one's health insurance policy.<o:p></o:p></span></p>
<p style="MARGIN-RIGHT: 8.25pt"><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">I</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">gnore any attempts from others to try to make you feel guilty or obligated to give more than you are able or comfortable to give. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">J</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">okes and humor from children, pets, friends and family can be a great source of strength. Try not to push humor out of your life, even when things are very serious. It's still okay to laugh. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">K</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">now your limits. Set your own goals and design your own schedule. Don't let anyone else decide for you what you are capable of accomplishing. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">L</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">et your loved one know with a word, touch, smile or hug that the disease has been stressful for both of you, but that he or she still has your full support. Not only is that support helpful for your loved one it is also important for your own well-being to keep that emotional bond strong when caring for his or her physical needs. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">M</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">ake peace with your loved one. Past hurts need to be resolved as much as possible in order to move forward in the caregiving relationship. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">N</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">ever take responsibility for your loved one's decisions. If he or she does not make progress, does not take the medication you offer, refuses to go to a doctor's appointment or makes other decisions that are beyond your control, it's not your fault. <b><o:p></o:p></b></span></p>
<p style="MARGIN-RIGHT: 8.25pt"><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">O</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">rganize responsibilities into as comfortable a routine as possible, allowing for the fact that caregiving is always full of surprises. <o:p></o:p></span></p>
<p style="MARGIN-RIGHT: 8.25pt"><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">P</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">repare an emergency card with your basic medical information and keep it close by so that hospital personnel will have access to vital information in the case of an emergency. Be sure to include a list of conditions or diseases, past procedures or surgeries, current medications, any implanted devices (e.g., a pacemaker) and an emergency contact name and phone number.<br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 14pt">Q</span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">uestion anything a doctor says that you don't understand. If you find yourself unclear about something after leaving a doctor's office, try to write down other questions for the next visit. For additional information.<br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">R</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">emember that you are not alone. Many other adults are caring for loved ones, as well as their own children. Support groups and online communities are available to connect people with each other.<br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">S</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">tretch, Breathe, Re-energize. Take small breaks whenever you can to nurture yourself, and lean on available resources to help you take longer breaks.<b><o:p></o:p></b></span></p>
<p style="MARGIN: 0in 0in 0pt" class="MsoNormal"><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">T</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">eam up with other people to get everything done. Rather than handling ten things every day on your own, enlist the help of others so that ten people can do one thing every day. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">U</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">pdate the list of your loved one's medications and dosages, and do everything possible to make sure that your loved one takes all medications as prescribed. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">V</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">erbalize your thoughts, feelings and plans with friends, family members, coworkers, bosses, neighbors and so forth. They will not know what you are dealing with, or how to help, unless you tell them. Sometimes you can just ask them to listen. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">W</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">atch for any signs of caregiver burnout in yourself, including&nbsp;mood swings, withdrawal from friends and family, uncontrollable crying spells, despair or helplessness, increased drinking or drug use, and other signs that you are trying to do too much by yourself. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">X</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">-rays, IV's, medical tests and procedures take time, and you may find yourself with hours to spend in a waiting room. Plan ahead for how you can make this time as productive and personally fulfilling as possible. <br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">Y</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">ell in privacy, pound a pillow, slam a car door, sing with the radio at the top of your lungs, and find other strategies for releasing pent-up emotions without verbally or physically hurting anyone. If you start feeling out of control, please reach out to someone for much-deserved help.<br /><br /></span><b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black"><font size="3">Z</font></span></b><span style="FONT-FAMILY: 'Verdana', 'sans-serif'; COLOR: black; FONT-SIZE: 10pt">ero in on exactly what is stressing you out before you try to do something about it. For example, if you feel very upset about a mess that has been made, are you feeling angry because you think it was caused by carelessness, tired about having to clean it up, scared that you can't handle additional tasks, self-pity at having to do yet another thing that you didn't sign up for, or other feelings? This is a very important step in <span style="mso-bidi-font-weight: bold"><a href="http://heart.healthcentersonline.com/stress/stressmanagement.cfm"><span style="COLOR: black; TEXT-DECORATION: none; text-underline: none">stress management</span></a></span>.</span><span style="COLOR: black; FONT-SIZE: 10pt"><o:p></o:p></span></p>
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    </content>
</entry>

<entry>
    <title>Michael&apos;s and My Perspective on the Important Topic of Second Primary Cancers in Multiple Myeloma</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2011/02/michaels-and-my-perspective-on-the-important-topic-of-second-primary-cancers-in-multiple-myeloma.html" />
    <id>tag:myeloma.org,2011:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.420733</id>

    <published>2011-02-18T22:39:54Z</published>
    <updated>2011-02-21T11:00:37Z</updated>

    <summary><![CDATA[I'm sure all of you have been following the topic of second primary cancers in myeloma which has recently been in the news.&nbsp;If you have not yet had the chance to read the IMF's "Frequently Asked Questions" as well as...]]></summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/">
        <![CDATA[<p class="MsoNormal" style="margin-bottom:10.0pt"><span style="font-family:&quot;Calibri&quot;,&quot;sans-serif&quot;">I'm
sure all of you have been following the topic of second primary cancers in
myeloma which has recently been in the news.&nbsp;If you have not yet had the chance to read the IMF's "Frequently Asked
Questions" as well as the follow up "Statement," I highly suggest you do so.&nbsp;Here are the direct links:</span><o:p></o:p></p>

<p class="MsoNormal" style="margin-bottom:10.0pt"><span style="font-family:&quot;Calibri&quot;,&quot;sans-serif&quot;"><b>Frequently
Asked Questions:</b></span><o:p></o:p></p>

<p class="MsoNormal" style="margin-bottom:10.0pt"><a href="http://myeloma.org/ArticlePage.action?articleId=3245"><span style="font-family:&quot;Calibri&quot;,&quot;sans-serif&quot;">http://myeloma.org/ArticlePage.action?articleId=3245</span></a><o:p></o:p></p>

<p class="MsoNormal" style="margin-bottom:10.0pt"><span style="font-family:&quot;Calibri&quot;,&quot;sans-serif&quot;"><b>Follow
Up Statement from Support Group Leader Conference Call on Second Primary
Cancers and myeloma treatment:</b></span><o:p></o:p></p>

<p class="MsoNormal" style="margin-bottom:10.0pt"><a href="http://myeloma.org/ArticlePage.action?tabId=0&amp;menuId=0&amp;articleId=3247&amp;aTab=-1"><span style="font-family:&quot;Calibri&quot;,&quot;sans-serif&quot;">http://myeloma.org/ArticlePage.action?tabId=0&amp;menuId=0&amp;articleId=3247&amp;aTab=-1</span></a><o:p></o:p></p>

<p class="MsoNormal" style="margin-bottom:10.0pt"><span style="font-family:&quot;Calibri&quot;,&quot;sans-serif&quot;">My
husband Michael and I discussed the ASH studies and above articles at
length.&nbsp;Of course, just like all of you,
we are concerned about any issues on myeloma treatment.<span style="mso-spacerun:yes">&nbsp; </span></span><o:p></o:p></p>

<p class="MsoNormal" style="margin-bottom:10.0pt"><span style="font-family:&quot;Calibri&quot;,&quot;sans-serif&quot;">Michael
is an 11-year myeloma survivor, diagnosed in 2000 at the age of 36.&nbsp;He was fortunate enough to be diagnosed with
myeloma at the best possible time.&nbsp;Sound
crazy?&nbsp;Well, when you look at what
treatment options were available prior to 2000 and that statistics were showing
average 3-5 year survival rates; compared to what treatment options are
currently available, where we are looking at much longer average survival rates
and better quality of life...well,
yes, that's positive progress!</span><o:p></o:p></p>

<p class="MsoNormal" style="margin-bottom:10.0pt"><span style="font-family:&quot;Calibri&quot;,&quot;sans-serif&quot;">Our
feelings are that we need to be "patient" patients.&nbsp;Based on the IMF's teleconference for support
group leaders in which we took part, it was clear that Dr. Durie, Dr. Anderson
and all the <a class="zem_slink" href="http://en.wikipedia.org/wiki/International_Myeloma_Working_Group" title="International Myeloma Working Group" rel="wikipedia">International Myeloma Working Group</a>'s scientific advisors are hard
at work gathering additional data.&nbsp;We
cannot and should not jump to conclusions and change our treatment plans until
we have clear data.&nbsp;Clinical trials are
set up to gather particular information in each phase of the trial.&nbsp;Post-trial data has not been tracked in the
past.&nbsp;As patients live longer because of
new treatments being approved which give us better quality of life, longer
remissions and overall survival, trials are also pointing to other aspects we
need to pay attention to and learn from.&nbsp;That is what the experts are doing now.</span><o:p></o:p></p>

<p class="MsoNormal" style="margin-bottom:10.0pt"><span style="font-family:&quot;Calibri&quot;,&quot;sans-serif&quot;">This
is all good news for myeloma patients!<span style="mso-spacerun:yes">&nbsp;
</span>We are living longer and learning what treatments are the best options
with the least side effects.&nbsp;As corny
as it may sound, I totally go back to the IMF's motto of <i style="mso-bidi-font-style:
normal">"Knowledge is Power."&nbsp;</i>The more we learn the better off we will all
be.&nbsp;So let's try our best to be
"patient" patients and caregivers.&nbsp;Talk
to your myeloma expert, read the IMF website for updates and trust that the
scientific advisors are reviewing all the data feverishly and thoroughly on
behalf of us all.</span><o:p></o:p></p>

<img alt="Caregiverblog_SPC.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/Caregiverblog_SPC.jpg" width="140" height="177" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p class="MsoNormal" style="margin-bottom:10.0pt"><span style="font-family:&quot;Calibri&quot;,&quot;sans-serif&quot;">Let me end with Michael's primary
thought:<span style="mso-spacerun:yes">&nbsp; </span>"When I relapsed in 2005,
Revlimid was in the Expanded Access Phase of the clinical trial.&nbsp;My myeloma expert, Dr. Ruben Niesvizky at
Weill Cornell Medical College, Robin, and I discussed all available options at
that time.&nbsp;There is no doubt in my mind
that Revlimid was my best option.&nbsp;I have
enjoyed the last 6 years in complete remission and a good quality of life.&nbsp;Who knows where I would be today if I did not
go on Revlimid.&nbsp;Of course, I will keep a
close watch to see what the experts learn and advise."</span><o:p></o:p></p>

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    </content>
</entry>

<entry>
    <title>Exciting News for Relapsed and Refractory Multiple Myeloma Patients! </title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2011/02/exciting-news-for-relapsed-and-refractory-multiple-myeloma-patients.html" />
    <id>tag:myeloma.org,2011:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.188578</id>

    <published>2011-02-02T21:17:44Z</published>
    <updated>2011-02-02T22:47:55Z</updated>

    <summary><![CDATA[This morning the very much awaited for announcement was made:&nbsp; the FDA has granted Onyx fast track designation for carfilzomib in treatment of relapsed and refractory multiple myeloma.&nbsp; The article is below.&nbsp; What this means for patients and their caregivers...]]></summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    <category term="americansocietyofhematology" label="American Society of Hematology" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="clinicaltrial" label="Clinical trial" scheme="http://www.sixapart.com/ns/types#tag" />
    <category term="foodanddrugadministration" label="Food and Drug Administration" 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/robins_caregiver_journal/">
        <![CDATA[<img alt="happy-face.gif" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/happy-face.gif" width="150" height="150" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p class="MsoNormal">This morning the very much awaited for announcement was made:<span style="mso-spacerun:yes">&nbsp; </span>the FDA has granted Onyx <a class="zem_slink" href="http://en.wikipedia.org/wiki/FDA_Fast_Track_Development_Program" title="FDA Fast Track Development Program" rel="wikipedia">fast track</a>
designation for carfilzomib in treatment of relapsed and refractory multiple
myeloma.<span style="mso-spacerun:yes">&nbsp; </span>The article is below.<span style="mso-spacerun:yes">&nbsp; </span>What this means for patients and their
caregivers is new hope.<span style="mso-spacerun:yes">&nbsp; </span>While myeloma is
not yet curable, it is treatable, and with each new drug that is approved, patients
are able to choose wisely with their doctors which treatment may be the best
option for them.<span style="mso-spacerun:yes">&nbsp; </span>Each new drug buys us
time and the possibility of longer remissions and better quality of life . . . until
someday there is a cure!</p>

<span style="font-size:12.0pt;mso-bidi-font-size:10.0pt;font-family:&quot;Book Antiqua&quot;;
mso-fareast-font-family:&quot;Times New Roman&quot;;mso-bidi-font-family:&quot;Times New Roman&quot;;
mso-ansi-language:EN-US;mso-fareast-language:EN-US;mso-bidi-language:AR-SA">Links
that may be of interest to you:</span><div><ul><li><font class="Apple-style-span" face="'Book Antiqua'"><span class="Apple-style-span" style="font-size: 15px; "><a href="http://myeloma.org/IndexPage.action?tabId=26&amp;menuId=0&amp;indexPageId=188&amp;parentLinkId=4012&amp;categoryId=0&amp;gParentType=tab&amp;gParentId=26&amp;parentIndexPageId=21&amp;parentCategoryId=438">Carfilzomib clinical trials</a></span><span class="Apple-style-span" style="font-size: 15px; "></span></font></li><li><font class="Apple-style-span" face="'Book Antiqua'"><span style="font-size:12.0pt;mso-bidi-font-size:10.0pt;
font-family:&quot;Book Antiqua&quot;;mso-fareast-font-family:&quot;Times New Roman&quot;;
mso-bidi-font-family:&quot;Times New Roman&quot;;mso-ansi-language:EN-US;mso-fareast-language:
EN-US;mso-bidi-language:AR-SA"><a href="http://myeloma.org/IndexPage.action?tabId=22&amp;menuId=218&amp;indexPageId=305&amp;parentMenuItemId=218&amp;categoryId=449">IMF American Society of Hematology (ASH) Webcasts</a>&nbsp;(check the overview, new agents and relapsed/refractory tabs for presentations about carfilzomib)</span></font></li><li><font class="Apple-style-span" face="'Book Antiqua'"><span style="font-size:12.0pt;mso-bidi-font-size:10.0pt;
font-family:&quot;Book Antiqua&quot;;mso-fareast-font-family:&quot;Times New Roman&quot;;
mso-bidi-font-family:&quot;Times New Roman&quot;;mso-ansi-language:EN-US;mso-fareast-language:
EN-US;mso-bidi-language:AR-SA"><a href="http://www.onyx-pharm.com/view.cfm/715/Onyx-Pharmaceuticals-Receives-Fast-Track-Designation-for-Carfilzomib-Company-Initiates-Rolling-NDA-Submission-for-Accelerated-Approval">Press release from Onyx Pharmaceuticals</a> announcing the FDA decision to grant Fast Track status to carfilzomib</span></font></li></ul></div>

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    </content>
</entry>

<entry>
    <title>Tips for Coasting Through a Winter Wonderland</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2011/01/tips-for-coasting-through-a-winter-wonderland.html" />
    <id>tag:myeloma.org,2011:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.112065</id>

    <published>2011-01-28T07:07:54Z</published>
    <updated>2011-01-28T07:59:26Z</updated>

    <summary><![CDATA[**UPDATE/HOT OFF THE PRESS:&nbsp; Today (Thursday) we woke up to 18 more inches of snow here in Connecticut.&nbsp; As beautiful as it is outside, it's also time to be smart and take extra&nbsp;safety&nbsp;precautions.&nbsp; This last storm brought very heavy/wet snow...]]></summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/">
        <![CDATA[<img alt="Snow2.gif" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/Snow2.gif" width="320" height="266" class="mt-image-right" style="float: right; margin: 0 0 20px 20px;" /><p class="MsoNormal"><i><span style="font-size:11.5pt;font-family:Georgia;
color:#5B5B5B;mso-bidi-language:HE">**UPDATE/HOT OFF THE PRESS:&nbsp; Today
(Thursday) we woke up to 18 more inches of snow here in <st1:state w:st="on"><st1:place w:st="on">Connecticut</st1:place></st1:state>.&nbsp; As beautiful as it is
outside, it's also time to be smart and take
extra&nbsp;safety&nbsp;precautions.&nbsp; This last storm brought very
heavy/wet snow so shoveling can be dangerous.&nbsp; Please remember that if you
absolutely HAVE to shovel please take breaks and pay attention to your
breathing.&nbsp; It's very cold outside too, so dress appropriately.&nbsp; Even
a trip out to the mailbox can be a big deal!&nbsp; A slip and fall for a myeloma
patient is never a good thing!</span></i></p>

<p class="MsoNormal"><i><span style="font-size:11.5pt;font-family:Georgia;
color:#5B5B5B;mso-bidi-language:HE">Check your prescriptions, if you are going
to run out, call the pharmacy to reorder and ask if they can deliver it to
you.&nbsp; If you don't need to go out and drive, then stay in and be safe!</span></i></p>

<p class="MsoNormal"><i><span style="font-size:11.5pt;font-family:Georgia;
color:#5B5B5B;mso-bidi-language:HE">Now's absolutely the time to ask for a
little help.&nbsp; Please be careful.</span></i></p>


<p class="MsoNormal"><span style="font-size:11.5pt;mso-bidi-font-size:10.0pt;
font-family:Arial;color:#5B5B5B;mso-bidi-language:HE">Since I live in <st1:place w:st="on">New England</st1:place>, I thought I would write a timely blog about
the snowy winter we've been having and how patients and caregivers deal with
it.&nbsp;&nbsp;&nbsp;</span><span style="font-size:11.5pt;font-family:Georgia;
color:#5B5B5B;mso-bidi-language:HE"><o:p></o:p></span></p>

<p class="MsoNormal"><span style="font-size:11.5pt;mso-bidi-font-size:10.0pt;
font-family:Arial;color:#5B5B5B;mso-bidi-language:HE">I was born in <st1:state w:st="on"><st1:place w:st="on">Connecticut</st1:place></st1:state> and fondly
remember playing outside in the snow, rolling different size snowballs into
giant snowmen, snowwomen and even snow doggies!&nbsp;&nbsp;Making snowforts and
having the best snowball fights and, of course, making the perfect snow angel
without getting your handprint in the snow when getting up!&nbsp;&nbsp;</span><span style="font-size:11.5pt;font-family:Georgia;color:#5B5B5B;mso-bidi-language:
HE"><o:p></o:p></span></p>

<p class="MsoNormal"><span style="font-size:11.5pt;mso-bidi-font-size:10.0pt;
font-family:Arial;color:#5B5B5B;mso-bidi-language:HE">Sliding in my parents'
backyard was a neighborhood favorite.&nbsp;&nbsp;We started in my yard and slid
through two neighbors' yards and then finally (if you so dared) through the
woods down "killer hill."&nbsp;&nbsp;&nbsp;By the time we walked back up
to the top to slide down again, it was time for a cup of hot
cocoa!&nbsp;&nbsp;What great memories!&nbsp;&nbsp;If you are going to live in <st1:place w:st="on">New England</st1:place>, then you'd better love the snow!</span><span style="font-size:11.5pt;font-family:Georgia;color:#5B5B5B;mso-bidi-language:
HE"><o:p></o:p></span></p>

<p class="MsoNormal"><span style="font-size:11.5pt;mso-bidi-font-size:10.0pt;
font-family:Arial;color:#5B5B5B;mso-bidi-language:HE">Today, while I still love
living in New England and enjoying all four seasons, the winter does bring with
it some challenges.&nbsp;&nbsp;Mother Nature gave us a foot of snow right after
Christmas, then another two feet last week, and today we are forecast to get 10
more inches!&nbsp;&nbsp;As a caregiver, I know this can add to our responsibilities
and worries.</span><span style="font-size:11.5pt;font-family:Georgia;
color:#5B5B5B;mso-bidi-language:HE"><o:p></o:p></span></p>

<p class="MsoNormal"><span style="mso-bidi-font-size:12.0pt;font-family:Arial;
color:#5B5B5B;mso-bidi-language:HE">&nbsp;</span><span style="font-size:11.5pt;
mso-bidi-font-size:10.0pt;font-family:Arial;color:#5B5B5B;mso-bidi-language:
HE">Are you able to drive your loved one/patient to their doctor's
appointments?&nbsp;&nbsp;Physical
Therapy?&nbsp;&nbsp;Pharmacy?&nbsp;&nbsp;Grocery store? (The list goes on) . .
.If you don't have front-wheel drive or better yet, four-wheel drive, this can
be a bit tricky!&nbsp;&nbsp;Here are a few ideas that may be
helpful:&nbsp;&nbsp; &nbsp;&nbsp;</span><span style="font-size:11.5pt;
font-family:Georgia;color:#5B5B5B;mso-bidi-language:HE"><o:p></o:p></span></p>

<p class="MsoNormal" style="margin-top:0in;margin-right:0in;margin-bottom:3.0pt;
margin-left:0in;text-indent:0in;mso-list:l0 level1 lfo1;tab-stops:list .5in"></p><ul><li><span class="Apple-style-span" style="color: rgb(91, 91, 91); font-family: Arial; font-size: 15px; ">Some cancer centers have volunteer drivers you can contact to arrange rides
to/from the doctor's appointment. Call your local cancer center and ask!</span></li><li><span style="font-size:10.0pt;mso-bidi-font-size:11.5pt;font-family:Symbol;
mso-fareast-font-family:Symbol;mso-bidi-font-family:Symbol;color:#5B5B5B;
mso-bidi-language:HE"><span style="mso-list:Ignore"><span style="font:7.0pt &quot;Times New Roman&quot;">&nbsp;</span></span></span><span dir="LTR"><span style="font-size:11.5pt;
mso-bidi-font-size:10.0pt;font-family:Arial;color:#5B5B5B;mso-bidi-language:
HE">Some towns have a "Senior Bus." Call your Town Hall and ask if they can
drive you to the doctors, therapists, pharmacy, grocery store.</span></span></li><li><span class="Apple-style-span" style="color: rgb(91, 91, 91); font-family: Arial; font-size: 15px; ">Small "mom &amp; pop" type pharmacies still offer delivery service. Check
with them!</span></li><li><span class="Apple-style-span" style="color: rgb(91, 91, 91); font-family: Arial; font-size: 15px; ">High school students need to fulfill a certain amount of community service
hours to graduate. Call your local high schools and find out if there are
responsible teenagers in your neighborhood that can help you.&nbsp;</span></li><li><span class="Apple-style-span" style="color: rgb(91, 91, 91); font-family: Arial; font-size: 15px; ">Other possible volunteers who may be able to help: Eagle Scouts, church
members, neighbors and, of course, family and friends.</span></li><li><span class="Apple-style-span" style="color: rgb(91, 91, 91); font-family: Arial; font-size: 15px; ">Shoveling! Need I say more? If you don't have someone plowing your driveway
this year, find someone now! Slipping and falling if you are a myeloma patient
is just not a good thing. If you've got kids in your neighborhood, ask them!
They'd love to make a little spending money . . . or better yet, perhaps even
save a bit for college!</span></li></ul><p></p>











<div align="center">

<table class="MsoNormalTable" border="1" cellspacing="0" cellpadding="0" style="mso-cellspacing:0in;background:white;border:solid #F2F2F2 1.0pt;
 mso-border-alt:solid #F2F2F2 .75pt;mso-padding-alt:3.75pt 3.75pt 3.75pt 3.75pt">
 <tbody><tr style="mso-yfti-irow:0;mso-yfti-firstrow:yes">
  <td style="border:none;padding:3.75pt 3.75pt 3.75pt 3.75pt"><img alt="Snow1.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/Snow1.jpg" width="400" height="300" class="mt-image-center" style="text-align: center; display: block; margin: 0 auto 20px;" />
  <p class="MsoNormal" align="center" style="text-align:center"></p></td></tr><tr style="mso-yfti-irow:1;mso-yfti-lastrow:yes"><td style="border:none;padding:3.75pt 3.75pt 3.75pt 3.75pt"><p class="MsoNormal" align="center" style="text-align:center"><b><span style="mso-bidi-font-size:12.0pt;font-family:Arial;color:#5B5B5B;mso-bidi-language:
  HE">Neighborly help is always welcome. &nbsp;Thanks, Chris!</span></b><span style="font-size:9.0pt;font-family:&quot;Times New Roman&quot;;color:#5B5B5B;
  mso-bidi-language:HE"><o:p></o:p></span></p>
  </td>
 </tr>
</tbody></table>

</div>

<p class="MsoNormal"><span style="font-size:11.5pt;font-family:Georgia;
color:#5B5B5B;mso-bidi-language:HE"><o:p>Y</o:p></span><span class="Apple-style-span" style="color: rgb(91, 91, 91); font-family: Arial; font-size: 15px; ">ou may find that people
are always asking you "what can I do to help?"&nbsp;&nbsp;Well, now may be the
time to let them know.&nbsp;&nbsp;It makes people feel good to help and it will
lighten your load a bit, too!</span></p><p class="MsoNormal"><span class="Apple-style-span" style="color: rgb(91, 91, 91); font-family: Arial; font-size: 15px; "></span><span class="Apple-style-span" style="color: rgb(91, 91, 91); font-family: Arial; font-size: 15px; ">During the last snowstorm
we had, our neighbor's son-in-law stopped by to snowblow his
driveway.&nbsp;&nbsp;He saw Michael, me and our two children shoveling our
driveway, and before we knew it - he was helping us too!&nbsp;&nbsp;(Thanks,
Chris!)&nbsp;Thanks, also, to our neighbor Gary for plowing out the end of the
driveway all winter!&nbsp;</span></p>

<p class="MsoNormal"><span style="font-size:11.5pt;mso-bidi-font-size:10.0pt;
font-family:Arial;color:#5B5B5B;mso-bidi-language:HE">Do you have some tips for
dealing with the winter weather&nbsp;to share?&nbsp;&nbsp;&nbsp;Please consider
posting them here under "comments." We'd love to hear from you!</span></p>]]>
        
    </content>
</entry>

<entry>
    <title>A Definition of True Grace Under Pressure</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2011/01/a-definition-of-true-grace-under-pressure.html" />
    <id>tag:myeloma.org,2011:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.56471</id>

    <published>2011-01-14T01:27:44Z</published>
    <updated>2011-01-15T01:31:59Z</updated>

    <summary>A very dear and respected friend and caregiver, Ray Uzanas, e-mailed me with a comment in response to my blog post from December 22, 2010 entitled &quot;10 Steps to Avoid Caregiver Burnout in 2011.&quot; He wanted to elaborate my point...</summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/">
        <![CDATA[<img alt="uzanasfamily-robinsblog.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/uzanasfamily-robinsblog.jpg" width="320" height="237" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p>A very dear and respected friend and  caregiver, Ray Uzanas, e-mailed me with a comment in response to my blog post from  December 22, 2010 entitled <a href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2010/12/10-steps-to-avoid-caregiver-burnout-in-2011.html">"10 Steps to Avoid Caregiver Burnout  in 2011."</a></p>
<p>He wanted to elaborate my point #10:  "Honor the work you're doing." &nbsp;</p>
<p>Ray was the caregiver to his wife Loretta  for 12 years. &nbsp;Loretta was diagnosed with  multiple myeloma in 1992. &nbsp;A later breast  cancer diagnosis and ensuing treatments further detracted from her <a class="zem_slink" href="http://en.wikipedia.org/wiki/Quality_of_life" title="Quality of life" rel="wikipedia">quality of life</a>.  &nbsp;Ray refers to Loretta's stamina as "Herculean,"  but as a caregiver, I'm sure Ray's efforts were equally courageous. </p>
<p>My hat's off to Ray and all <a class="zem_slink" href="http://en.wikipedia.org/wiki/Caregiver" title="Caregiver" rel="wikipedia">caregivers</a>  for the love, patience, dedication and hope they display each and every day. Ray  has also written a book entitled "Odyssey of a Wayward Traveler," which began a  journey of self-discovery, renewal and adventure. &nbsp;&nbsp;&nbsp;&nbsp; <br />
  Here is Ray's take on "Honoring the  work you do": </p>
<p><em>As survival time for MM increases, so  does the care-giving period, and this is both a blessing and challenge to caregivers  and their loved ones. Despite their faithful support and love, caregivers' resolve  can be tested often as the years pass. The altered lifestyle can take its toll on  the most well-intentioned of caregivers.</em></p>
<p><em>During my 12 years as a caregiver to  my wife Loretta, at times of particular stress, I would draw strength and purpose  in the knowledge that I was given another calling, another challenge, another path  to follow in life that would permit further character development; new and meaningful  ways of expressing my love to another person; and finally, by the very nature of  my behavior, set an example worthy of being passed to family, friends and others.  &nbsp;</em></p>
<p><em>We, as caregivers, never asked for that  role, just as those diagnosed with MM never asked for their disease. I think it's  how we "play the hands we're dealt" during our lives that can define our  legacy.</em></p>
<p>Thanks, Ray, for your insight into the  caregiver experience! &nbsp;I'd love to hear from  other voices out there how you deal with challenges we all face sometimes. </p>


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    </content>
</entry>

<entry>
    <title>&apos;Patient-Friendly&apos; Thoughts from a 16-Year Myeloma Survivor</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2011/01/patient-friendly-thoughts-from-a-16-year-myeloma-survivor.html" />
    <id>tag:myeloma.org,2011:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.56458</id>

    <published>2011-01-12T01:19:48Z</published>
    <updated>2011-01-15T01:26:59Z</updated>

    <summary><![CDATA[If you're a caregiver, I'm sure one of your main concerns is learning about the latest and greatest in the myeloma research/treatment world. &nbsp;Interpreting all of this information can be a challenge. In one of my first posts on this...]]></summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/">
        <![CDATA[<img alt="JackandMichael.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/JackandMichael.jpg" width="320" height="240" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p>If you're a caregiver, I'm sure one of your  main concerns is learning about the latest and greatest in the myeloma research/treatment  world. &nbsp;Interpreting all of this information  can be a challenge. <br />
  In one of my first posts on this blog I talked about what I look for when reviewing  research information from the <a class="zem_slink" href="http://www.hematology.org/" title="American Society of Hematology" rel="homepage">American Society of Hematology</a> (ASH). </p>
<p>Today, I'm going to introduce you to someone who does a really good job of understanding  the data.</p>
<p>Years ago, Michael and I attended the annual meeting of ASH with another myeloma  patient and good friend, Jack Aiello. &nbsp;Jack  was diagnosed with multiple myeloma in January of 1995. Yes, you read correctly,  1995, which means he is a 16-year survivor. <br />
  We also had the opportunity to attend ASH again this year in Orlando, Florida  with Jack. &nbsp;His perspective on these meetings  is fresh and "patient friendly," and Jack is allowing me to share with you his thoughts. </p>
<p><strong>Myeloma Highlights from ASH According to Jack (definitely  not medically trained)</strong> <br />
  This is the fifth year I've attended ASH. I typically focus on the <a class="zem_slink" href="http://www.wikinvest.com/concept/Clinical_trials" title="Clinical trials" rel="wikinvest">Clinical  Trials</a>, which I'm able to understand and are more relevant near-term to patients</p>
<p>During the last couple of years at ASH there have been many reports on response  rates to combination therapies, which typically include the novel drugs Revlimid,  Velcade, and/or Thalidomide; the effectiveness dosage reductions; whether maintenance  treatment might increase overall survival; and, of course, the results of new drug  therapy. <br />
  This year provided more encouraging data results for many of these regimens.  Last year was the first time I'd ever heard <strong>100% ORR* response rate</strong> for newly  diagnosed patients in a trial with RVd. &nbsp;And  this year I heard it twice in trials with VdC-mod and CfzRd. <strong>Maintenance</strong> treatment with or without a preceding transplant using lower doses of Revlimid,  Velcade or Thalidomide all <strong>improve PFS, but it's too soon to know if OS is extended</strong>.<br />
  Some <strong>transplants regimens</strong> show seven-year median survival rates and are  considered a treatment option for transplant eligible patients. &nbsp;Will novel therapy treatment surpass transplant  efficacy? &nbsp;It's just too soon to tell.</p>
<p><strong>A Few Comments I Found Provocative</strong></p>
<ul>
  <li><span dir="LTR">A panel of experts was asked "<strong>How important  is CR</strong> for a non-transplant patient"? &nbsp;Answers "Important for OS"-D. Roodman; "Yes, but  be mindful of toxicities"-N.Raje; "The goal is to always get the best possible response"-  J. Kaufman; "We see durable PR's." C. Farber. An observational trial Vd vs V-only  showed <strong>better responses for Vd but similar TTP &amp; OS</strong>. [Sun-3027]</span></li></ul><ul><li>If PET-CT scan shows spine lesion, should  follow with an MRI to further quantify." S. Jagannath</li>
  <li><span dir="LTR">"Although <strong>maintenance </strong>has shown longer  PFS, we cannot change the OS metric as a means to validate treatment." S. Rajkumar;  "<a class="zem_slink" href="http://en.wikipedia.org/wiki/Maintenance_therapy" title="Maintenance therapy" rel="wikipedia">Maintenance therapy</a> is effective and likely to be with us for a long time." G Morgan</span></li></ul><ul>
  <li><span dir="LTR">"For relapsed MM patients, I look at <strong>Disease-related</strong> (e.g. response duration, cytogentics), <strong>Regimen-related</strong> (e.g. prior drug experience,  dosage mode) and <strong>Patient-related</strong> (e.g. pre-existing toxicities such as PN,  age) factors before determining next treatment." For example, using current drugs,  if patient's MM is indolent, slow and first relapse, I'll suggest Rev if initial  tx was Velcade &amp; visa-versa, or a transplant if at least 18-24 mos remission  from prior transplant. &nbsp;If the patient's MM  is aggressive, rapid and has had several relapses, I'll suggest DCEP or DTPACE chemos  or VR combo's or perhaps a transplant, which can give quick control but is likely  to have a short-lived response." S. Lonial</span></li></ul><ul>
  <li><span dir="LTR">At ASH2010 there are 300 abstracts on new  MM drugs and combination therapies, including <strong>IMIDs:</strong> Pomalidomide; <strong>Protesome  Inhibitors:</strong> Carfilzomib, CEP18770, NPI-0052; <strong><a class="zem_slink" href="http://en.wikipedia.org/wiki/Histone_deacetylase_inhibitor" title="Histone deacetylase inhibitor" rel="wikipedia">HDAC Inhibitors</a>:</strong>Panobinostat,  Vorinostat, Tubacin; <strong>PI3K/Akt Pathway inhibitor</strong>: Perifosine; <strong>KSP Inhibitor:</strong> ARRY-520; <strong>CDK4/6 Inhibitor:</strong> PD 0332991; <strong><a class="zem_slink" href="http://en.wikipedia.org/wiki/Mammalian_target_of_rapamycin" title="Mammalian target of rapamycin" rel="wikipedia">mTOR</a> Inhibitors:</strong> Temsirolimus,  RAD001; <strong>Monoclonal Antibodies:</strong> <a class="zem_slink" href="http://en.wikipedia.org/wiki/Elotuzumab" title="Elotuzumab" rel="wikipedia">Elotuzumab</a>, CNTO328, <a class="zem_slink" href="http://en.wikipedia.org/wiki/Milatuzumab" title="Milatuzumab" rel="wikipedia">Milatuzumab</a>. S. Lonial</span></li></ul><ul>
  <li><span dir="LTR">"<strong>Carfilzomib</strong> is incredible." D. Siegel  &nbsp;[Onyx hopes to go to FDA s<strong>ummer 2011 for  approval</strong>.] Both Onyx and Millennium are working on oral versions of proteasome  inhibitors.</span></li></ul><ul>
  <li><span dir="LTR">"The 5-yr PFS is 100% for R consolidation  and maintenance so I'm beginning to think some of these pts might be cured." M.  Attal</span></li></ul><ul>
  <li><span dir="LTR">New IFM/DCFI 2009 study: <strong>RVd*3, hvst,  SCT, RVd*2, Rx18 mos</strong> vs<strong>RVd*3, hvst, RVd*5, Rx18mos (SCT@relapse)</strong>.</span></li></ul><ul>
  <li><span dir="LTR">When one of the Pomalidomide studies showed  Pom given 21 of 28 days worked as well as 28 of 28, a question from the audience  asked <strong>"Why not 14 of 28?"</strong></span></li>
</ul>
<p>*For a definition of acronyms go to this <a href="http://myeloma.org/ArticlePage.action?tabId=1&amp;menuId=204&amp;articleId=2311&amp;aTab=0&amp;gParentType=menuitem&amp;gParentId=204&amp;parentIndexPageId=107">glossary</a>.</p>
<p>Thanks, Jack! </p>
<p><em>To hear direct clinical trial updates from the investigators  go to the IMF website and click on webcasts </em><a href="http://www.myeloma.org./"><em>www.myeloma.org.</em></a><em> &nbsp;And don't forget that on Thursday, Jan. 13, the  IMF presents a teleconference, "Best of ASH - What Myeloma Patients Need to  Know," with Dr. Brian Durie and featuring a Q&amp;A.</em></p>


<div class="zemanta-pixie" style="margin-top:10px;height:15px"><a class="zemanta-pixie-a" href="http://www.zemanta.com/" title="Enhanced by Zemanta"><img class="zemanta-pixie-img" src="http://img.zemanta.com/zemified_e.png?x-id=3f4f40df-dea5-4e53-853b-e1dfd46e6400" alt="Enhanced by Zemanta" style="border:none;float:right" /></a></div>]]>
        
    </content>
</entry>

<entry>
    <title>In the News: Our New Blog!</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2011/01/in-the-news-our-new-blog.html" />
    <id>tag:myeloma.org,2011:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.56408</id>

    <published>2011-01-05T01:05:50Z</published>
    <updated>2011-01-15T01:18:56Z</updated>

    <summary><![CDATA[Hi there and Happy New Year! Recently, Brynn Mandel of the Waterbury Republican-American newspaper in Connecticut contacted me for an interview about this blog. &nbsp; Well, on Saturday the newspaper ran a teaser pixture that an article would be in...]]></summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/">
        <![CDATA[<p>Hi there and Happy New Year! </p>
<p>Recently, Brynn Mandel of the Waterbury Republican-American  newspaper in Connecticut  contacted me for an interview about this blog. &nbsp; </p>
<p>Well, on Saturday the newspaper ran a teaser pixture  that an article would be in the Sunday Edition/Health Section. &nbsp;The next morning, when I opened up the Sunday paper  - bam - there was a picture of our family and a great article! </p>
<p>Here's a teaser. You can find the entire article  by clicking on the link below. &nbsp;Thanks, Brynn! <br />
  <br />
  <strong><a href="http://www.rep-am.com/articles/2011/01/04/lifestyle/health/530870.txt"></a></strong></p><h3><strong><a href="http://www.rep-am.com/articles/2011/01/04/lifestyle/health/530870.txt">Couple turns devastating diagnosis into vehicle of hope </a></strong></h3><p></p>
<p><em>BY BRYNN MANDEL |REPUBLICAN-AMERICAN</em></p>
<p>They are a family that turned a devastating diagnosis  into a mission, and now their work -- which has brought them from the halls of Congress  to an RV that they steered through a swath of the country to raise awareness -- will  extend to the virtual world. </p>
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    </content>
</entry>

<entry>
    <title>10 Steps to Avoid Caregiver Burnout in 2011</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2010/12/10-steps-to-avoid-caregiver-burnout-in-2011.html" />
    <id>tag:myeloma.org,2010:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.56396</id>

    <published>2010-12-23T00:59:23Z</published>
    <updated>2011-01-15T22:26:27Z</updated>

    <summary><![CDATA[ During this hectic holiday season, I'd like to share with you some tidbits I've learned along the way as a caregiver. &nbsp;I love Michael with all my heart, and if you have a spouse who has been diagnosed with...]]></summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/">
        <![CDATA[
<img alt="fireworks.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/fireworks.jpg" width="240" height="180" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p>During this hectic holiday season, I'd like to share with you some tidbits I've  learned along the way as a caregiver. &nbsp;I love  Michael with all my heart, and if you have a spouse who has been diagnosed with  myeloma, I'm sure you feel the same way - you want to do everything you can to help  him or her. </p>
<p>I'll start with a story: A teacher holds up a glass of water and asks his class  how heavy it is. After they guess, he explains it's not absolute weight that matters,  but how long you have to carry it. A few minutes is easy, but if it's every day  for months, sooner or later the burden will become unbearable--you'll have to put  it down and recharge before you can pick it up again. </p>
<p>&nbsp;<strong>Here are a few suggestions:</strong></p>
<p><strong>1. &nbsp;Realize that you  are the caregiver.</strong> &nbsp;Although you want  to do everything you can to help, you don't want to take away a person's dignity  or make choices for them. &nbsp;You are there to  help them and work together as a team. &nbsp;Let  them do what they can and offer help when needed.</p>
<p><strong>2. &nbsp;Learn about myeloma  advances.</strong> &nbsp;&nbsp;Knowledge is Power. &nbsp;When my husband was first diagnosed ten years ago,  the greatest anxiety was fear of the unknown. &nbsp;Once I started learning all I could from reliable  sources--treatment options, side effects, clinical trials, quality of life issues--I  started to feel empowered, more in control of myself as well as Michael's treatment  plan.</p>
<p><strong>3. &nbsp;Become a pro at  organization.</strong> Keep a binder with all medical records and take notes when  you go to the doctors. &nbsp;You may even want  to bring a tape recorder, just ask the doc first if he's ok with that. &nbsp;If you are good on the computer, you can download  the IMF's free &nbsp;<a href="http://manager.myeloma.org/">Myeloma Manager, personal care assistant.</a> &nbsp;At its core, the Myeloma Manager provides a tool  to capture lab results and display and print tables and charts to show how those  results change over time. &nbsp;The site features  a webinar on how to use this.</p>
<p><strong>4. &nbsp;Prioritize. &nbsp;&nbsp;</strong>Job #1 is taking  care of the patient, yourself and your family; dirty laundry and dust bunnies are  not. Put on blinders, and simplify your life. &nbsp;&nbsp;</p><p>
  <strong>5. &nbsp;Resist doing everything  yourself. &nbsp;</strong>Determine what's  unique to your position as caregiver, and what you can delegate. If the patient  is your spouse, save your energy for when he/she wakes up terrified or sick in middle  of the night--that's support no one else can provide. &nbsp;&nbsp;Call a family-and-friends  meeting and explain how they can help; post a volunteers' schedule they can access  online like <a href="http://www.lotsahelpinghands.com/">Lotsa Helping Hands</a> or <a href="http://caringbridge.com/">CaringBridge</a>. &nbsp;CaringBridge helps you stay connected with loved  ones during a serious health event.</p><p>
  </p><p>
  <strong>6. &nbsp;Recharge your batteries.</strong> Make time for yourself  to maintain a fresh, optimistic outlook. &nbsp;You also need to take care of yourself. &nbsp;When you get on a plane, what are the instructions  the steward gives you? . . . To put your mask on first &nbsp;. . . right?</p>
<p><strong>7. &nbsp;Create a multi-layered  emotional support network. &nbsp;</strong>Talking relieves  worry and stress. &nbsp;If you attend a myeloma  support group with your spouse, that's great; but are you able to discuss your concerns  as a caregiver? &nbsp;At our myeloma support group  in Connecticut,  I hold a special breakout meeting just for caregivers at least once a year. &nbsp;&nbsp;If you don't  go to a support group (which I highly recommend) then perhaps you can create a blog  or use the <a href="http://listserv.myeloma.org">ACOR listserv </a>, a  great sounding board when you're up at 2  a.m. looking for answers.</p>
<p><strong>8. &nbsp;Acknowledge your  feelings.</strong> Caregivers often bury their emotions or feel guilty for having them. One of  the hardest to voice is needing a break from caregiving. The last thing you may  want to say is "no," but at times it may be necessary--"No, I can't  drive you to the doctor's today, but Sam will." &nbsp;And that's OK.</p>
<p><strong>9. &nbsp;Check yourself for  signs of depression.</strong> &nbsp;These include sleep  problems, significant changes in weight, and more frequent illnesses. You may be  so focused on taking care of the patient you don't notice that your clothes don't  fit or aren't concerned about the lack of sleep.</p>
<p><strong>10. &nbsp;Honor the work  you're doing.</strong> &nbsp;&nbsp;Caregiver is the ultimate rewarding job because  you do it out of love. &nbsp;Realize that what  you're doing really matters in life.</p><p>
  </p><p>
  Do you have any more tips for caregivers? &nbsp;I would love to hear from you about them! &nbsp;Meanwhile, I'd like to wish everyone a Happy, Healthy,  Peaceful Holiday and New Year! </p>
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    </content>
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<entry>
    <title>Don&apos;t Let Fear of &quot;The Beast&quot; Ruin Your Life!</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2010/12/dont-let-fear-of-the-beast-ruin-your-life.html" />
    <id>tag:myeloma.org,2010:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.56368</id>

    <published>2010-12-15T00:51:32Z</published>
    <updated>2011-01-15T22:28:28Z</updated>

    <summary>I promised to tell you about a serendipitous meeting at the ASH meeting in Orlando in my first post. In August of 2000, when Michael was going through his initial testing for multiple myeloma at New York Presbyterian Hospital/Cornell University,...</summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/">
        <![CDATA[<img alt="ASH2010small.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/ASH2010small.jpg" width="250" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" /><p>I promised to tell you  about a serendipitous meeting at the <strong>ASH</strong> meeting in Orlando in my first post. In August of 2000,  when Michael was going through his initial testing for multiple myeloma at New  York Presbyterian Hospital/Cornell University, his first bone marrow biopsy was  performed by a young doctor, who was just a fellow at the time, <a href="http://www.med.nyu.edu/biosketch/choh02">Dr. Hearn Jay  Cho</a>. </p>
<p>Unfortunately, the  results of the biopsy confirmed that Michael had myeloma. He had just turned  36.&nbsp;Dr. Cho gave us the diagnosis and we talked about what myeloma is and  what options were available. </p>
<p>I'm sure you remember the  day (like in slow motion) when you or your loved one was diagnosed with myeloma  and the initial fear and anxiety crushing down on your life. I see newly  diagnosed people at our support group and they have that "deer in the  headlights" kind of look on their face. &nbsp; </p>
<p>But as time goes by, we  learn that fear does not help us. &nbsp;We need to learn as much as we can and  to be proactive in this fight against the beast called myeloma. <br />
  <br />
  During the 10 years since Michael's  diagnosis, Dr. Cho moved to <a href="http://www.med.nyu.edu/">NYU Cancer Institute</a>, where he is Assistant Professor of Medicine and  Pathology.<br />
  <br />
  <br />
  During those same 10 years,&nbsp;Michael  had a stem cell transplant (2002) no maintenance, surgery (2004), relapse  (2005) and went on the <a class="zem_slink" href="http://en.wikipedia.org/wiki/Expanded_access" title="Expanded access" rel="wikipedia">expanded access program</a> of Rev/Dex and is currently on  Rev (10 mg) and low dose dex. &nbsp;I'm thrilled to report that he is still  enjoying complete remission and a great quality of life! &nbsp;While the MM has  had tough side effects with bone involvement and he can't do things like he  used to . . . he's able to&nbsp;<em>carefully</em>&nbsp;coach our son's little  league baseball team and basketball team. &nbsp;The kids know about the myeloma  and joke that if they make Mr. Tuohy chase a ball they'll have to do laps!  &nbsp;LOL! </p>
<p>Cut to the ASH meeting in  Orlando: Our  paths were about to cross again. Michael and I attended the&nbsp;IMF's Junior  and Senior Grant Awards&nbsp;presentation, and there to receive an award was  Dr. Hearn Cho!&nbsp; It was one of the highlights of our attending ASH to learn  that this young doctor committed himself to stay in the myeloma field and is  conducting research to help our futures!&nbsp;<strong><em>(Next to him in the photo  below is Tricia Nardiello, a PhD student who works in Dr. Cho's Lab. &nbsp;She  gave a talk at ASH on the MAGE-A3 project.)</em></strong></p>
<p>After the awards ceremony  we talked to Dr. Cho about myeloma . . . but we talked more about life! We  talked about our children and music. &nbsp;It was so much fun to hear Dr. Cho  and Michael talking about rock-and-roll and what concerts they'd recently seen  and that his son plays the drums and ours plays the bass and our daughter plays  piano! &nbsp;Maybe they'll have a band together someday, who knows?</p><p><img alt="cho.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/cho.jpg" width="320" height="240" class="mt-image-center" style="text-align: center; display: block; margin: 0 auto 20px;" /></p><p align="center" style="text-align: left;">
  Dr. Cho is one of many  beneficiaries of the IMF's research grant program, which funds promising  clinical investigators around the world in an effort to improve outcomes for  myeloma patients. &nbsp;He is looking at a class of drugs called  "anti-folates," which have been used for other types of cancer, but  not myeloma. </p>
<p>"There is a new  anti-folate called pralatrexate," Dr. Cho&nbsp;told me in an interview  after the conference, "and we have discovered that many myeloma cells are  susceptible to this drug. &nbsp;In resistant cells, we have identified at least  two genes that may help the cells escape the killing effect of pralatrexate.  &nbsp;Therefore, if we can find other medicines that can change the expression  of these two genes, we can convert resistant cells into sensitive cells.<br />
  <br />
  "These other  medicines don't necessarily have to kill myeloma cells, but combining them with  pralatrexate could be a potent new method for treating myeloma. &nbsp;Our goal  is to have clinical trials of these 'rationally designed' pralatrexate  therapies within the next two years."</p>
<p>I also asked Dr. Cho what  he felt are the most promising clinical trials in each of the newly dx, relapse  and relapse/refractory settings?</p>
<p>"I think everyone in  the myeloma field is excited about the recent results with combinations of  Revlimid, Velcade, and dexamethasone for newly diagnosed multiple  myeloma," he said. &nbsp;"We need to be cautious, though, because we  do not know yet if the higher up front response rates will translate into  longer survival for patients. &nbsp;We hope so, but it is not known, yet.  &nbsp;Pomalidomide and Carfilzomib are two drugs that are in late stage  clinical trials that we are eager to get into regular clinical practice  soon." </p>
<p>Dr. Cho said that the  <a class="zem_slink" href="http://www.wikinvest.com/concept/Clinical_trials" title="Clinical trials" rel="wikinvest">clinical trial</a> he is very excited about "is based on the other project in  my laboratory. &nbsp;We are opening a multi-institutional trial in 2011 of a  vaccine targeting a protein called MAGE-A3, which is expressed in many  patients' myeloma cells. &nbsp;We are adding the vaccine to auto-transplant, in  order to stimulate an immune response against MAGE-A3 that will help each  patient's own immune system find and kill remaining myeloma cells." </p>
<p>The trial is sponsored by  the <a class="zem_slink" href="http://www.licr.org/" title="Ludwig Institute for Cancer Research" rel="homepage">Ludwig Institute for Cancer Research</a> with financial and logistic support of  <a class="zem_slink" href="http://www.gsk.com" title="GlaxoSmithKline" rel="homepage">Glaxo Smith-Kline</a>. &nbsp;NYU Cancer Institute is the lead institution, along  with partner institutions Memorial Sloan-Kettering Cancer  Center and <a class="zem_slink" href="http://www.fccc.edu/" title="Fox Chase Cancer Center" rel="geolocation">Fox Chase Cancer Center</a>. </p>
<p>Dr. Cho sounded very  hopeful about the progress being made on the myeloma front. Hope is good. As  Henry James wrote in "The Beast in the Forest,"  don't let the fear of the beast ruin your life.&nbsp; Go out today and make  some fun and create beautiful memories! <br />
  <br />
  <strong>If you've got a fond memory you'd  like to share - send me your comment! &nbsp;We all need to hear about life  outside of myeloma too!</strong>&nbsp;&nbsp; </p>


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<entry>
    <title>&quot;Some of These Patients Will Be Cured&quot;</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2010/12/some-of-these-patients-will-be-cured.html" />
    <id>tag:myeloma.org,2010:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.56298</id>

    <published>2010-12-12T00:22:36Z</published>
    <updated>2011-01-15T00:47:56Z</updated>

    <summary>For the next few days I&apos;ll look at a few of the studies presented at the ASH (American Society of Hematology) 2010 annual meeting from a caregiver&apos;s point of view. I&apos;ll try to boil the complicated findings about myeloma treatment...</summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/">
        <![CDATA[<img alt="michaelandrobinatASH.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/michaelandrobinatASH.jpg" width="250" height="168" class="mt-image-right" style="float: right; margin: 0 0 20px 20px;" /><p><a href="http://robinscaregiverjournal.blogspot.com/2010/12/some-of-these-patients-will-be-cured.html"></a>For the next few days I'll look at a few of the studies presented at the ASH (American Society of Hematology) 2010 annual meeting from a caregiver's point of view. I'll try to boil the complicated findings about myeloma treatment down to a few key points.</p>
<p>What's really exciting is to be sitting in on the ASH panels, as Michael and I were, and hearing nuggets of hope.&nbsp; Case in point was when Dr. Michel Attal of the Hopital Purpan in Toulouse, France, lead investigator in a study of Revlimid maintenance after stem cell transplantation&nbsp;said, during a Q&amp;A: "I'm convinced some of these patients will be cured."</p>
<p>Today, let's look at Revlimid in the maintenance setting and continuous treatment.</p><hr>
<p><a href="ArticlePage.action?tabId=22&amp;menuId=218&amp;articleId=3137&amp;aTab=-4&amp;gParentType=menuitem&amp;gParentId=218&amp;parentIndexPageId=305&amp;parentCategoryId=532">#1 Revlimid Maintenance After Stem Cell Transplantation (CALGB  100104 Study)</a></p>
<p>In the first study, 568 multiple myeloma patients under the  age of 70 years were randomized to receive either Revlimid maintenance therapy  or a placebo following autologous stem cell transplantation.</p>
<p>A preliminary data analysis from this study in 2009 showed  such a significant improvement in the time to disease progression in the  Revlimid maintenance arm that the study was unblinded, and patients in the  placebo arm were allowed to switch over to the Revlimid maintenance arm.</p>
<p>The 18-month follow-up results were presented by lead  investigator Dr. Philip McCarthy of the Roswell Park Cancer Institute in Buffalo, New York.  The results showed that patients who received Revlimid exhibited a median time  to disease progression of 42 months compared to 22 months for patients who  received the placebo. Overall survival was similar for the two groups. Dr. McCarthy  explained that this may be due to the significant percentage of placebo  patients who switched over to Revlimid maintenance when the trial was unblinded  in late 2009.</p>
<hr>
<p><a href="http://abstracts.hematologylibrary.org/cgi/content/abstract/114/22/529?maxtoshow=&amp;hits=10&amp;RESULTFORMAT=1&amp;andorexacttitle=and&amp;titleabstract=lenalidomide+ifm+614&amp;andorexacttitleabs=and&amp;andorexactfulltext=and&amp;searchid=1&amp;FIRSTINDEX=0&amp;sortspec=relevance&amp;resourcetype=HWCIT">#2 Revlimid Maintenance After Stem Cell Transplantation (IFM  Study)<br />
  One of the most exciting things to come out of this  presentation was confirmation of what I wrote about in my first blog post:&nbsp;the  importance to patients and caregivers of Quality of Life.</a></p>
<p>Here, 614 multiple myeloma patients under the age of 65  years who had recently undergone stem cell transplantation received  consolidation therapy with Revlimid, and then were randomized to receive long-term  Revlimid maintenance therapy or a placebo.</p>
<p>A preliminary data analysis in late 2009 showed that  Revlimid maintenance significantly improved <a class="zem_slink" href="http://en.wikipedia.org/wiki/Progression-free_survival" title="Progression-free survival" rel="wikipedia">progression-free survival</a>. Therefore,  this trial was also unblinded in mid-2010, and patients who were originally in  the placebo group began receiving the Revlimid treatment regimen.</p>
<p>Dr. Attal, lead investigator of the study, presented results  based on data that was collected up until the unblinding of the study. The  results showed that Revlimid consolidation therapy improved responses and  progression-free survival compared to transplantation alone. Revlimid  maintenance therapy, however, did not significantly increase the number of  patients who achieved a complete response.</p>
<p>When the study was unblinded, it was estimated that four  years after diagnosis 60% of patients who received Revlimid maintenance would  still be alive without disease progression compared to 33% for patients who  received the placebo.</p>
<p>This benefit was observed even if patients achieved a  complete response after induction therapy, showing the importance of  maintenance even if a patient achieves a good response after initial treatment. </p>
<p>Dr. Attal commented that a longer follow-up study was needed  to appreciate the impact on overall survival. However, he said that the better  progression free survival is a huge improvement in&nbsp;Quality of Life.&nbsp;</p>
<hr>
<p><a href="http://abstracts.hematologylibrary.org/cgi/content/abstract/116/21/622?maxtoshow=&amp;hits=10&amp;RESULTFORMAT=1&amp;author1=palumbo&amp;andorexacttitle=and&amp;titleabstract=459&amp;andorexacttitleabs=and&amp;andorexactfulltext=and&amp;searchid=1&amp;FIRSTINDEX=0&amp;sortspec=relevance&amp;resourcetype=HWCIT">#3 Revlimid Maintenance In Newly Diagnosed, Older Myeloma  Patients</a></p>
<p>Dr. Antonio Palumbo from the University  of Torino in Italy investigated the addition of  Revlimid to melphalan and prednisone in elderly newly diagnosed myeloma  patients.</p>
<p>The study included 459 patients ages 65 years and older who  received one of three possible treatment regimens. One regimen consisted of  nine 28-day cycles of melphalan and prednisone alone, followed by placebo (MP).  The second regimen consisted of nine 28-day cycles of melphalan, prednisone, and  Revlimid, also followed by placebo (MPR). The third regimen was the same as the  second, but, instead of receiving placebo after the first nine cycles of  treatment, patients received maintenance therapy with Revlimid (MPR-R).</p>
<p>Dr. Palumbo and his colleagues found that responses were  more rapid and better with MPR-R than MP, with a median onset of response of 2  and 3 months, respectively, and overall response rates of 70% and 50%, respectively.</p>
<p>A comparison of the different regimens showed that the  Revlimid maintenance regimen, MPR-R, had a longer progression-free survival  than the other two regimens. Progression-free survival for MPR-R, MPR, and MP  were 31, 14, and 13 months, respectively. These results show a clear benefit to  Revlimid maintenance therapy but have caused some physicians to doubt the  advantage of using Revlimid upfront in elderly patients.</p>
<p>Side effects of MPR-R were manageable, but a larger  percentage of patients on that regimen discontinued therapy due to side effects  as compared to patients on MP. The most common severe side effects were low  blood cell counts that occurred during the MPR phase of treatment. </p>
<hr>
<p>That's enough for today. Hope this info was helpful and  interesting to you. Remember the IMF's motto,&nbsp;Knowledge is Power.&nbsp;The  more we learn the better we'll be able to make treatment decisions along with  our doctors.</p>
<p>I don't know about you, but I'm very excited with the  results coming out of all of these trials and will certainly look forward to  updated information to come.</p>
For  further information, the full abstracts from ASH may be found at: <a href="http://bloodjournal.hematologylibrary.org/misc/ASH_Meeting_Abstracts_Info.dtl">http://bloodjournal.hematologylibrary.org/misc/ASH_Meeting_Abstracts_Info.dtl </a>

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<entry>
    <title>Just Returned From ASH</title>
    <link rel="alternate" type="text/html" href="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/2010/12/just-returned-from-ash.html" />
    <id>tag:myeloma.org,2010:/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal//16.56245</id>

    <published>2010-12-10T00:02:52Z</published>
    <updated>2011-01-15T00:22:28Z</updated>

    <summary><![CDATA[Michael and I were thrilled to have been invited to the 52nd&nbsp;Annual Meeting of the&nbsp;American Society of Hematology (ASH)&nbsp;in Orlando, Fla., December 4-7, 2010.&nbsp; These are the largest hematological meetings in the world, attended by researchers, hematologists, oncologists, scientists, nurses...]]></summary>
    <author>
        <name>Robin Tuohy</name>
        <uri>http://myeloma.org/Main.action?source=menuItem&amp;tabId=30&amp;menuId=280</uri>
    </author>
    
    
    <content type="html" xml:lang="en-us" xml:base="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/">
        <![CDATA[<img alt="ASH2010small.jpg" src="http://myeloma.org/MtEntryPage.action?source=/imf_blogs/robins_caregiver_journal/ASH2010small.jpg" width="250" class="mt-image-left" style="float: left; margin: 0 20px 20px 0;" />Michael and I were thrilled to have been invited to the 52<span class="Apple-style-span" style="line-height: 18px; "><sup><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; "><span class="Apple-style-span" style="font-size: small; ">nd</span></span></sup></span><span class="Apple-style-span" style="line-height: 18px; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; ">&nbsp;Annual Meeting of the&nbsp;<b><a class="zem_slink" href="http://www.hematology.org/" title="American Society of Hematology" rel="homepage">American Society of Hematology</a> (ASH)</b>&nbsp;in Orlando, Fla., December 4-7, 2010.&nbsp; These are the largest hematological meetings in the world, attended by researchers, hematologists, oncologists, scientists, nurses interested in the most promising research in blood cancers to date.</span></span><div class="post-body entry-content" style="width: 520px; font-size: 15px; position: relative; "><font class="Apple-style-span" face="'Helvetica Neue', Arial, Helvetica, sans-serif"><span class="Apple-style-span" style="line-height: 18px;"><br /></span></font><div class="MsoNormal" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 1.4; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; ">Knowing that myeloma is 1% of all cancers and considered an "orphan cancer"--and yet seeing thousands of people interested specifically in myeloma -- well, that's not just exciting, it's hope!&nbsp; Hope for OUR futures!</span></div><div class="MsoNormal" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 1.4; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; "><br /></span></div><div class="MsoNormal" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 1.4; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; ">The words that I usually key in on at these types of meetings are:</span></div><div class="MsoNormal" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 1.4; "><ul style="padding-top: 0px; padding-right: 2.5em; padding-bottom: 0px; padding-left: 2.5em; margin-top: 0.5em; margin-right: 0px; margin-bottom: 0.5em; margin-left: 0px; line-height: 1.4; "><li style="padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; margin-top: 0px; margin-right: 0px; margin-bottom: 0.25em; margin-left: 0px; text-indent: 0px; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; "><b>Quality of Life</b></span><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; ">&nbsp;- something that just a few years ago was not discussed or factored into a <a class="zem_slink" href="http://www.wikinvest.com/concept/Clinical_trials" title="Clinical trials" rel="wikinvest">clinical trial</a>.&nbsp; Today, <a class="zem_slink" href="http://en.wikipedia.org/wiki/Quality_of_life" title="Quality of life" rel="wikipedia">QoL</a> is mentioned in every abstract and is considered an important part of treatment when doctors/patients contemplate treatment options.&nbsp;</span></li><li style="padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; margin-top: 0px; margin-right: 0px; margin-bottom: 0.25em; margin-left: 0px; text-indent: 0px; text-align: justify; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; "><b>Overall Survival</b></span><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; ">&nbsp;- One of the bottom lines we like to look at in all trials.&nbsp; While Time to Progression (TTP) is important, to me, Overall Survival is a "telling" piece of data.</span></li><li style="padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; margin-top: 0px; margin-right: 0px; margin-bottom: 0.25em; margin-left: 0px; text-indent: 0px; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; "><b><a class="zem_slink" href="http://en.wikipedia.org/wiki/Adverse_Events" title="Adverse Events" rel="wikipedia">Adverse Events</a></b></span><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; ">&nbsp;- paying close attention to Grade 3 and 4 AEs and what they are.</span></li></ul></div><div class="MsoNormal" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 1.4; "><div style="text-align: justify; "><span style="line-height: 17px; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; ">Let me share with you a quick experience:&nbsp; If you look at Michael's bio/MM history on this site, you can see that in 2002 Michael had an&nbsp;<b><a href="Main.action?source=link&amp;tabId=1&amp;menuId=156&amp;linkId=2459&amp;parentTabId=0&amp;parentLinkId=0&amp;parentMenuItemId=156&amp;parentNuggetId=0&amp;parentKeywordId=0">Auto Stem Cell Transplant</a>.</b>&nbsp; After the transplant, the research indicated maintenance of thalidomide.&nbsp; This may have given longer TTP but not OS.&nbsp; So in our opinion, a big deal.&nbsp; Michael's remission MAY be longer if he went on&nbsp;</span></span><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; "><a href="Main.action?source=link&amp;tabId=1&amp;menuId=156&amp;linkId=45&amp;parentTabId=0&amp;parentLinkId=0&amp;parentMenuItemId=156&amp;parentNuggetId=0&amp;parentKeywordId=0">Thalidomide</a> (his TTP may be longer) BUT, may not affect his Overall Survival. &nbsp;</span></div><div style="text-align: justify; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; "><br /></span></div></div><div class="MsoNormal" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 1.4; "><span style="line-height: 17px; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; ">Our thinking at the time was that maintenance on Thalidomide may impact his quality of life with possible neuropathy issues and it would also be "blowing" another treatment option and most importantly may not even matter as far as OS.&nbsp; Remember, <a href="Main.action?source=link&amp;tabId=1&amp;menuId=156&amp;linkId=1237&amp;parentTabId=0&amp;parentLinkId=0&amp;parentMenuItemId=156&amp;parentNuggetId=0&amp;parentKeywordId=0">Velcade</a> and <a href="Main.action?source=link&amp;tabId=1&amp;menuId=156&amp;linkId=2048&amp;parentTabId=0&amp;parentLinkId=0&amp;parentMenuItemId=156&amp;parentNuggetId=0&amp;parentKeywordId=0">Revlimid</a> were not yet approved. &nbsp;</span></span><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; ">We decided to wait and watch very closely and to save his options. &nbsp;We hoped that new drugs would be approved (which they were) with fewer side effects and better outcomes.</span></div><div class="MsoNormal" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 1.4; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px; "><br /></span></div><div class="MsoNormal" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 1.4; "><span style="line-height: 17px; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; ">Today, it's a different story emerging from ASH.&nbsp; The issue of continuous treatment or "maintenance" is one of the most important trends!&nbsp; Specifically with <a href="Main.action?source=link&amp;tabId=1&amp;menuId=156&amp;linkId=2048&amp;parentTabId=0&amp;parentLinkId=0&amp;parentMenuItemId=156&amp;parentNuggetId=0&amp;parentKeywordId=0">Revlimid</a>, research is showing that treating early and continuing treatment until the disease returns or progresses has an important role in myeloma treatment.&nbsp; All this with a better Quality of Life, too!</span></span></div><div class="MsoNormal" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 1.4; "><span style="line-height: 17px; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; "><br /></span></span></div><div class="MsoNormal" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 1.4; "><span style="line-height: 17px; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; "><b>The International Myeloma Foundation</b>&nbsp;has started posting&nbsp;<a href="http://myeloma.org/IndexPage.action?tabId=22&amp;menuId=218&amp;indexPageId=305&amp;parentMenuItemId=218&amp;categoryId=449" style="text-decoration: none; color: rgb(255, 99, 0); ">webcasts</a>&nbsp;of interviews with key myeloma experts presenting their trials.&nbsp; Check these out and look each day for new ones posted.&nbsp;&nbsp; Listening to these webcasts are better than my reporting statistics to you as you'll get to hear the info direct from the researcher!</span></span></div><div class="MsoNormal" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 1.4; "><span style="line-height: 17px; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; "><br /></span></span></div><div class="MsoNormal" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 1.4; "><span style="line-height: 17px; "><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; ">Stay tuned for my next post from the ASH, where I'll share with you a serendipitous meeting!</span></span></div></div>

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