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	<title>Comments on: A Glimpse Of The Provenge Rally At FDA HQ</title>
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	<description>News, Comment and Conversation</description>
	<pubDate>Fri, 10 Feb 2012 15:59:17 +0000</pubDate>
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		<title>By: Tony F</title>
		<link>http://www.pharmalot.com/2007/09/a-glimpse-of-the-provenge-rally/#comment-20079</link>
		<dc:creator>Tony F</dc:creator>
		<pubDate>Fri, 21 Sep 2007 05:54:26 +0000</pubDate>
		<guid isPermaLink="false">http://www.pharmalot.com/2007/09/a-glimpse-of-the-provenge-rally/#comment-20079</guid>
		<description>Ed, as an attendee at the Cancer Rally at the FDA (and my first, despite having ample opportunity to attend protest rallies in the 60's), it was impressive to see so many people from all across the country take their time and funds to insure they were there for CANCER patients--not just for prostate cancer patients.

I spoke with Frank Burroughs and Steve Walker of Abigail Alliance; Kerry and Mrs. Kerry Donahue, the attorney for CareToLive which has filed the lawsuit against the FDA for an INJUNCTION allowing terminal patients and their doctors to choose the best therapy--including as yet unapproved by the FDA, albeit safe, treatments;  Arnie and Mrs. Mass advocates from Chicago; prostate cancer patients Ray M. and Bruce Tower--the latter from a small East Texas town-- who have both taken Provenge and who attribute their continued survival with a good Qualtiy of Life to Provenge; and folks from New Jersey, PA, VA, FL, TX and all the way across the country from California.

There was also an 18 year old young man with a sign about his experience with cancer and who appeared to be asking the FDA for help with his case. There is a photo of this young man here 6th row from top on far left at the beginning of the row:  

http://picasaweb.google.com/ttpotser/RallyForCancerPatientsAtTheFDA    
  
Bruce Tower's story actually was most heart-rending bringing tears to my eyes as to exactly how badly his condition had been over the years which included strong radiation causing scaring and necessitating the installation of stents into his kidneys and out his back and down to collecting bags on his legs; hormone therapy which caused female mammary tissue to grow and which necessitated a mastectomy on one side; steroid treatments resulting in a weight gain to over 300# and a myraid of other medical maladies which was a litany of heart-tearing events.  It can be seen and heard here:  http://www.youtube.com/watch?v=RmlDsIJjQIw   

It was difficult NOT to have one's resolve INCREASED after hearing the 2 patients speak of their own personal happenstances and of their belief that Provenge had both extended their lives AND given them excellent Quality of Life.
 
Other groups supporting the Rally were from the Sarcoma Foundation who said that terrible disease has been in trials for 12 years and have used all the available cancer patients and another trial is needed without having more new patients to enroll... 12 years is TOO LONG to bring this drug beneficial to only a few... including children as I understood it... who get this terrible disease.
 
Cancer Cure Coalition was well represented also with a speaker and I was pleased to see several organizations combining to make the Rally a success and presenting a UNITED front to the FDA for early access to cancer treatments in terminal cases.

Lastly, it was mentioned that Congress will be taking up the "Access Act" which will allow faster access to treatments for terminal patients. Let's all get behind this for the benefit of those in such dire need.

... and Thank You!, Ed, for keeping this topic in front of the public!!</description>
		<content:encoded><![CDATA[<p>Ed, as an attendee at the Cancer Rally at the FDA (and my first, despite having ample opportunity to attend protest rallies in the 60&#8217;s), it was impressive to see so many people from all across the country take their time and funds to insure they were there for CANCER patients&#8211;not just for prostate cancer patients.</p>
<p>I spoke with Frank Burroughs and Steve Walker of Abigail Alliance; Kerry and Mrs. Kerry Donahue, the attorney for CareToLive which has filed the lawsuit against the FDA for an INJUNCTION allowing terminal patients and their doctors to choose the best therapy&#8211;including as yet unapproved by the FDA, albeit safe, treatments;  Arnie and Mrs. Mass advocates from Chicago; prostate cancer patients Ray M. and Bruce Tower&#8211;the latter from a small East Texas town&#8211; who have both taken Provenge and who attribute their continued survival with a good Qualtiy of Life to Provenge; and folks from New Jersey, PA, VA, FL, TX and all the way across the country from California.</p>
<p>There was also an 18 year old young man with a sign about his experience with cancer and who appeared to be asking the FDA for help with his case. There is a photo of this young man here 6th row from top on far left at the beginning of the row:  </p>
<p><a href="http://picasaweb.google.com/ttpotser/RallyForCancerPatientsAtTheFDA" rel="nofollow">http://picasaweb.google.com/ttpotser/RallyForCancerPatientsAtTheFDA</a>    </p>
<p>Bruce Tower&#8217;s story actually was most heart-rending bringing tears to my eyes as to exactly how badly his condition had been over the years which included strong radiation causing scaring and necessitating the installation of stents into his kidneys and out his back and down to collecting bags on his legs; hormone therapy which caused female mammary tissue to grow and which necessitated a mastectomy on one side; steroid treatments resulting in a weight gain to over 300# and a myraid of other medical maladies which was a litany of heart-tearing events.  It can be seen and heard here:  <a href="http://www.youtube.com/watch?v=RmlDsIJjQIw" rel="nofollow">http://www.youtube.com/watch?v=RmlDsIJjQIw</a>   </p>
<p>It was difficult NOT to have one&#8217;s resolve INCREASED after hearing the 2 patients speak of their own personal happenstances and of their belief that Provenge had both extended their lives AND given them excellent Quality of Life.</p>
<p>Other groups supporting the Rally were from the Sarcoma Foundation who said that terrible disease has been in trials for 12 years and have used all the available cancer patients and another trial is needed without having more new patients to enroll&#8230; 12 years is TOO LONG to bring this drug beneficial to only a few&#8230; including children as I understood it&#8230; who get this terrible disease.</p>
<p>Cancer Cure Coalition was well represented also with a speaker and I was pleased to see several organizations combining to make the Rally a success and presenting a UNITED front to the FDA for early access to cancer treatments in terminal cases.</p>
<p>Lastly, it was mentioned that Congress will be taking up the &#8220;Access Act&#8221; which will allow faster access to treatments for terminal patients. Let&#8217;s all get behind this for the benefit of those in such dire need.</p>
<p>&#8230; and Thank You!, Ed, for keeping this topic in front of the public!!</p>
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		<title>By: Ernest swauger</title>
		<link>http://www.pharmalot.com/2007/09/a-glimpse-of-the-provenge-rally/#comment-20006</link>
		<dc:creator>Ernest swauger</dc:creator>
		<pubDate>Thu, 20 Sep 2007 15:17:07 +0000</pubDate>
		<guid isPermaLink="false">http://www.pharmalot.com/2007/09/a-glimpse-of-the-provenge-rally/#comment-20006</guid>
		<description>The really sad part is at the beginning of the rally, it was announced that the Commissioner would only talk to us if we cancelled the rally.  If the commissioner would talk to us there would be no need for a rally.  

"A true leader has the confidence to stand alone, the courage to make tough decisions, and the compassion to listen to the needs of others. He does not set out to be a leader, but becomes one by the equality of his actions and the integrity of his intent."-Douglas McArthur</description>
		<content:encoded><![CDATA[<p>The really sad part is at the beginning of the rally, it was announced that the Commissioner would only talk to us if we cancelled the rally.  If the commissioner would talk to us there would be no need for a rally.  </p>
<p>&#8220;A true leader has the confidence to stand alone, the courage to make tough decisions, and the compassion to listen to the needs of others. He does not set out to be a leader, but becomes one by the equality of his actions and the integrity of his intent.&#8221;-Douglas McArthur</p>
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		<title>By: Health Blog : Watchful Waiting on AstraZeneca's Prostate Cancer Drug</title>
		<link>http://www.pharmalot.com/2007/09/a-glimpse-of-the-provenge-rally/#comment-19993</link>
		<dc:creator>Health Blog : Watchful Waiting on AstraZeneca's Prostate Cancer Drug</dc:creator>
		<pubDate>Thu, 20 Sep 2007 13:11:06 +0000</pubDate>
		<guid isPermaLink="false">http://www.pharmalot.com/2007/09/a-glimpse-of-the-provenge-rally/#comment-19993</guid>
		<description>[...] for hormone-refractory disease, shows how badly patients want new options. (See Pharmalot&#8217;s post on a demonstration by Provenge advocates outside FDA [...]</description>
		<content:encoded><![CDATA[<p>[...] for hormone-refractory disease, shows how badly patients want new options. (See Pharmalot&#8217;s post on a demonstration by Provenge advocates outside FDA [...]</p>
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		<title>By: Lisa</title>
		<link>http://www.pharmalot.com/2007/09/a-glimpse-of-the-provenge-rally/#comment-19988</link>
		<dc:creator>Lisa</dc:creator>
		<pubDate>Thu, 20 Sep 2007 12:32:55 +0000</pubDate>
		<guid isPermaLink="false">http://www.pharmalot.com/2007/09/a-glimpse-of-the-provenge-rally/#comment-19988</guid>
		<description>Ed, 
We should have a new Poll!
Do the Dinosaurs "stay" or GO"</description>
		<content:encoded><![CDATA[<p>Ed,<br />
We should have a new Poll!<br />
Do the Dinosaurs &#8220;stay&#8221; or GO&#8221;</p>
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