<?xml version="1.0" encoding="UTF-8" ?>
<?xml-stylesheet type="text/xsl" href="https://community.macmillan.org.uk/cfs-file/__key/system/syndication/atom.xsl" media="screen"?><feed xmlns="http://www.w3.org/2005/Atom" xml:lang="en-US"><title type="html">Myeloma, Let&amp;#39;s Talk!</title><subtitle type="html" /><id>https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/atom</id><link rel="alternate" type="text/html" href="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog" /><link rel="self" type="application/atom+xml" href="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/atom" /><generator uri="http://telligent.com" version="12.1.2.21912">Telligent Community (Build: 12.1.2.21912)</generator><updated>2009-10-14T07:14:14Z</updated><entry><title>Efficacy of High Dose Chemo and SCT</title><link rel="alternate" type="text/html" href="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/posts/efficacy-of-high-dose-chemo-and-sct" /><id>https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/posts/efficacy-of-high-dose-chemo-and-sct</id><published>2009-10-29T16:48:55Z</published><updated>2009-10-29T16:48:55Z</updated><content type="html">&lt;p&gt;Many of you may be aware that there is a RAGING debate occurring in the Myeloma community among patients AND medicos about doing a SCT at all. The reason for this debate is that the new novel therapy drugs &amp;quot;can&amp;quot; be used to beat back Myeloma, in a maintenance therapy sort of format. &amp;nbsp;Studies are currently starting in the US to address the claims of doing this. &amp;nbsp;They are collecting the patients own stem cells, in case, and then putting them on a new novel therapy cocktail, monitoring them, and if they need a high dose chemo with SCT they will have stem cells previously collected available for them. Collecting stem cells AFTER you have been on long term therapy is quite difficult, so this method is excellent. &amp;nbsp;&lt;/p&gt;
&lt;p&gt;I learned something new recently which I didn&amp;#39;t know. &amp;nbsp;The SCT is only really used for the RECOVERY of the patient after they have received very high doses of chemotherapy which wipes out their immune system. &amp;nbsp;Your stem cells are infused to help you to recover more quickly, instead of on your own, and get you out of the danger zone of not being able to fight infection.&lt;/p&gt;
&lt;p&gt;So, the debate... I get updates on latest research and since we opted for the high dose chemo with SCT (two of them!), I often find myself still interested in information that validates our decision. &amp;nbsp;I know, I know, the horse has already left the barn, but I still do this.&lt;/p&gt;
&lt;p&gt;I have learned that there are two medical points of view... You will have a doctor that believes this disease will kill you and so they are only interested in &amp;quot;managing&amp;quot; the disease. &amp;nbsp;There is a fair argument for this. &amp;nbsp;On the other hand, the research doctors (not the treating doctors) seem to be more interested in getting you into CR (Complete Remission) as quickly as possible so that you can have your life back and have a better chance of being around for the &amp;quot;curative&amp;quot; protocols they are working on. &amp;nbsp;Many will get into CR without the high dose SCT route, but it takes longer and they may or may not have debilitating side effects and lowered quality of life issues. &amp;nbsp;Its an interesting debate, but one that I feel is very valuable and really should depend on the presentation of the patient at the time of discovery. &amp;nbsp;Do they have other health complications, etc. There use to be no choice and now there is. I think its a good thing, although I fully appreciate the difficulty a patient and their family faces when newly diagnosed trying to figure this all out. &amp;nbsp;&lt;/p&gt;
&lt;p&gt;Having said all of that, and I would be interested in your take on it... There is a paper out today of which I can only get the abstract, but again, they are still validating the &amp;quot;proven&amp;quot; high dose chemo with SCT and its efficacy. &amp;nbsp;The novel therapy approach, though extremely interesting and appealing to some, is not proven. &amp;nbsp;But it is also not disproven either. &amp;nbsp;Sigh... its not easy to decide. However, 10 years ago, &amp;nbsp;most all Myeloma patients would be dead now. &amp;nbsp;So the silver lining is that we are living longer and longer, many are way out there (not enough yet), and their quality of life is improving. &amp;nbsp;&lt;/p&gt;
&lt;p&gt;The High Risk group is now garnering much (overdue) interest in research as the Low Risk group seems to be getting into CR and staying there for a long time. So the researcher&amp;#39;s attention is shifting to the high risk group that is still not faring well at all!&lt;/p&gt;
&lt;p&gt;Best, Lori&lt;/p&gt;
&lt;p&gt;
&lt;p class="citation"&gt;&lt;a title="Seminars in oncology."&gt;Semin Oncol.&lt;/a&gt;&amp;nbsp;2004 Apr;31(2 Suppl 4):99-105.&lt;/p&gt;
&lt;h1 class="title"&gt;Multiple myeloma: the role of transplant and novel treatment strategies.&lt;/h1&gt;
&lt;p class="auth_list"&gt;&lt;a href="http://www.ncbi.nlm.nih.gov/pubmed?term=%22Kaufman%20J%22%5BAuthor%5D&amp;amp;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract"&gt;Kaufman J&lt;/a&gt;,&amp;nbsp;&lt;a href="http://www.ncbi.nlm.nih.gov/pubmed?term=%22Lonial%20S%22%5BAuthor%5D&amp;amp;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract"&gt;Lonial S&lt;/a&gt;.&lt;/p&gt;
&lt;p class="aff"&gt;Winship Cancer Institute, Emory University School of Medicine, Atlanta, GA 30322, USA.&lt;/p&gt;
&lt;div class="abstract_text"&gt;
&lt;p&gt;Multiple myeloma will be diagnosed in over 14,000 new patients over the next year. While myeloma is rarely curable, recent advances have improved the care and outlook for most patients. Recent progress has been made on the molecular characterization of myeloma, cytogenetics, prognosis, and supportive care. Randomized trials have proven the efficacy of high-dose therapy supported by autologous transplantation. Reduced-intensity allogeneic transplantation, associated with much less morbidity and mortality than standard myeloablative transplantation, can now be offered to more myeloma patients. And finally, a greater understanding of the pathophysiology of myeloma development and progression, growth, and survival have led to the development and clinical use of several novel therapeutics. This review will discuss recent improvements in therapies for myeloma focusing on transplantation and novel targeted therapies.&lt;/p&gt;
&lt;/div&gt;
&lt;p class="pmid"&gt;PMID: 15124142 [PubMed - indexed for MEDLINE]&lt;/p&gt;
&lt;/p&gt;&lt;div style="clear:both;"&gt;&lt;/div&gt;&lt;img src="https://community.macmillan.org.uk/aggbug?PostID=266588&amp;AppID=30028&amp;AppType=Weblog&amp;ContentType=0" width="1" height="1"&gt;</content><author><name>Former Member</name><uri>https://community.macmillan.org.uk/members/formermember</uri></author><category term="disease" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/disease" /><category term="working" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/working" /><category term="Myeloma" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/Myeloma" /><category term="side effects" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/side%2beffects" /><category term="research" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/research" /><category term="chemotherapy" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/chemotherapy" /><category term="therapy" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/therapy" /><category term="Trials" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/Trials" /><category term="school" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/school" /><category term="remission" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/remission" /><category term="infection" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/infection" /></entry><entry><title>Hello!</title><link rel="alternate" type="text/html" href="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/posts/hello" /><id>https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/posts/hello</id><published>2009-10-14T14:14:14Z</published><updated>2009-10-14T14:14:14Z</updated><content type="html">&lt;p&gt;Hello Multiple Myeloma Members! &amp;nbsp;I&amp;#39;m still getting myself used to this new site and all its quirks, good and bad. &amp;nbsp;I have enabled some new features on the Myeloma, Let&amp;#39;s Talk! Group site. &amp;nbsp;You can now blog here directly if you would like. &amp;nbsp;I have also made a few of the &amp;quot;old timers&amp;quot; Managers, like on our old group site, so that I&amp;#39;m not the only one in charge of the group and approving membership. &amp;nbsp;I noticed the other day, someone asked to join and when I looked at their profile, there was none except that they had joined every group on this site, so I disapproved them.&amp;nbsp;&lt;/p&gt;
&lt;p&gt;So WELCOME! &amp;nbsp;Here we are on the new merged site and a larger social group with merging of WhatNow? and Share. &amp;nbsp;I hope that we can use this group to talk about our process, our treatment, our recovery, and the new treatment protocols coming down the pike. &amp;nbsp;Those of us who have been doing this a while will do everything we can to help you through your journey and share our experiences in order to help you make the decision that is right for you. &amp;nbsp;&lt;/p&gt;
&lt;p&gt;Multiple Myeloma is a very &amp;quot;fluid&amp;quot; disease right now in terms of treatment options. &amp;nbsp;I encourage you to utilize the links we have put up to get some valid information in your search for what to do now.&lt;/p&gt;
&lt;p&gt;But know this, it is no longer a death sentence, it is not your fault that you were diagnosed with MM, people are living longer and longer and learning to LIVE with Myeloma. &amp;nbsp;Do not despair.&lt;/p&gt;
&lt;p&gt;Lori (Habubrat)&lt;/p&gt;&lt;div style="clear:both;"&gt;&lt;/div&gt;&lt;img src="https://community.macmillan.org.uk/aggbug?PostID=261482&amp;AppID=30028&amp;AppType=Weblog&amp;ContentType=0" width="1" height="1"&gt;</content><author><name>Former Member</name><uri>https://community.macmillan.org.uk/members/formermember</uri></author><category term="disease" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/disease" /><category term="Myeloma" scheme="https://community.macmillan.org.uk/cancer-blogs/b/myeloma__let_s_talk_-blog/archive/tags/Myeloma" /></entry></feed>