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		<title><![CDATA[discussion boards — 38 year old friend with Cholangiocarcinoma]]></title>
		<link>http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=207</link>
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		<description><![CDATA[The most recent posts in 38 year old friend with Cholangiocarcinoma.]]></description>
		<lastBuildDate>Sun, 27 Aug 2006 16:31:49 +0000</lastBuildDate>
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			<title><![CDATA[Re: 38 year old friend with Cholangiocarcinoma]]></title>
			<link>http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=891#p891</link>
			<description><![CDATA[<p>Thanks for the responses.&nbsp; As for my friend&#039;s doctor, she has visited both UCSF and MD Anderson in Texas.&nbsp; She will be going forward with MD Anderson.&nbsp; Last week, she had tests run and they want to run more tests....they see spots outside her liver (pancreas, intestines, I think).&nbsp; If the tumor has metastisized, surgery will not be an immediate option but rather aggressive chemotherapy to stop the spreading.&nbsp; She is considering going back for back to back tests rather than fly to Texas and have gaps between tests (days).&nbsp; The first available date is the week of September 14 and the doctors state that the wait should not hurt her.</p><p>I did research&nbsp; on a dendritic cells study being explored by a Dr. Gorter.&nbsp; Although the article I have read pertains to other cancers (pancreatic, breast cancer), the theory sounds interesting and plausable.&nbsp; Pharmaceutical companies are not interested because no drug is involved...it uses your bodies dendritic cells...You can view the article at <a href="http://www.odemagazine.com">www.odemagazine.com</a>; current issue; cancer vaccine.&nbsp; If you get a chance to read it, please let me know what you think.</p>]]></description>
			<author><![CDATA[null@example.com (Mo)]]></author>
			<pubDate>Sun, 27 Aug 2006 16:31:49 +0000</pubDate>
			<guid>http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=891#p891</guid>
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			<title><![CDATA[Re: 38 year old friend with Cholangiocarcinoma]]></title>
			<link>http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=878#p878</link>
			<description><![CDATA[<p>Mo,</p><p>I am 51 years old and had my liver resected last November 30th at University of Colorado Hosptial in Denver by Dr. Martin McCarter, and I was very pleased with his work.&nbsp; They took half of my liver with my orange-sized tumor.&nbsp; It took about two months to recover.&nbsp; I would definitely go for the liver resection.&nbsp; I would have your friend check out clinical trials, particularly the Davanat trial as possible treatment after surgery.&nbsp; You can&#039;t get into some of the clinical trials if you&#039;ve had chemo.&nbsp; You can go to clinicaltrials.gov to get more info.&nbsp; By the time you&#039;re on the chemical trial for what might be a cycle of chemo, you&#039;ll know if the clinical t rial is working.</p><p>I was on the Sorafenib clinical trial in March and April.&nbsp; My tumors had grown back at my first scan after surgery in late February and doubled in size by early May, so the Sorafenib didn&#039;t work for me and had some strong side effects - rash, hand-foot syndrome.&nbsp; Several other people on this site have been on the Sorafenib trial and I don&#039;t think anyone has had any success.&nbsp; When they did my surgery, they found cancer in my lymph nodes, so they told me it&#039;d probably come back.&nbsp; I don&#039;t think they expected it to come back so fast.</p><p>I would read the blogs on this site, the info on the general info page , and as much of the discussions as possible.&nbsp; &nbsp;This website has been so helpful and I can&#039;t thank Rick and Stacie enough.</p><p>I am on chemo now - Gemzar (gemcitabline) and Xeloda (capecitabine) - and it seems to be helping, particulary after adding the Xeloda.&nbsp; At my last scan the tumor&nbsp; growth had slowed substantially and my liver enzymes have improved as well.</p><p>Hope this helps.&nbsp; Good luck.&nbsp; Keep us posted.</p><p>-Caroline Stoufer&nbsp; (Cell phone number 970-596-1068, e-mail: buckskin@ouraynet.com)</p>]]></description>
			<author><![CDATA[null@example.com (Caroline Stoufer)]]></author>
			<pubDate>Thu, 24 Aug 2006 04:58:35 +0000</pubDate>
			<guid>http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=878#p878</guid>
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			<title><![CDATA[Re: 38 year old friend with Cholangiocarcinoma]]></title>
			<link>http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=877#p877</link>
			<description><![CDATA[<p>Mo,</p><p>This is great news.&nbsp; If they think she is resectable, go and get it done.&nbsp; After the surgery you will need to make some careful decisions.&nbsp; Chemotherapy or not.&nbsp; You may also want to look at some alternative therapies and certainly look through the website so you can get as much information as possible.</p><p>Keep us posted on what is suggested to your friend.&nbsp; When we first began flying around and seeking out opinions for my brother, I took a tape recorder and recorded every conversation we had with a dr.&nbsp; I would then type up everything and we could look carefully over the notes to make decisions.&nbsp; Also, other members of the family who didn&#039;t go to the appointments could be fully updated. </p><p>Really the patient is the only one who can make the decision.&nbsp; But it helps if you can read through things after the appointment.&nbsp; It&#039;s hard to take in all the information especially in the whirlwind initial stages of this disease.&nbsp; The patient, is sometimes intimidated and even overwhelmed by the amount of information.&nbsp; This makes it difficult to decide the best thing to do.&nbsp; Be sure to ask the Dr&#039;s you visit - how questions can be addressed, via email or possibly phone calls.&nbsp; You will need to get a good amount of information before you make a decision.&nbsp; It&#039;s much easier when you know you&#039;ll have someone you can ask questions.</p><p>Please let your friend know that she is joined by many on this site her age.&nbsp; Unfortunately, by many younger (21 is our youngest) and also by many who are years out and still fighting this disease.&nbsp; There is much hope.</p><p>Good Luck!<br />Stacie</p>]]></description>
			<author><![CDATA[null@example.com (stacie)]]></author>
			<pubDate>Wed, 23 Aug 2006 14:36:44 +0000</pubDate>
			<guid>http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=877#p877</guid>
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			<title><![CDATA[Re: 38 year old friend with Cholangiocarcinoma]]></title>
			<link>http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=876#p876</link>
			<description><![CDATA[<p>Mo,<br />Welcome to the club no one wants to belong to.&nbsp; This is a great site for support and information and I&#039;m sure you&#039;ll find help here.&nbsp; <br />The key right now is to go for the surgery ASAP.&nbsp; If your friend is eligible that&#039;s a gift as it remains the most effective treatment for this beast of a disease.&nbsp; Do you have a surgeon with experience with this disease?&nbsp; <br />While following that path you&#039;ll also have time to help with research for what possible additional steps you may all choose.<br />May she find the best care and have good results.<br />-Peter</p>]]></description>
			<author><![CDATA[null@example.com (Peter)]]></author>
			<pubDate>Wed, 23 Aug 2006 12:18:26 +0000</pubDate>
			<guid>http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=876#p876</guid>
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			<title><![CDATA[38 year old friend with Cholangiocarcinoma]]></title>
			<link>http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=874#p874</link>
			<description><![CDATA[<p>Hello...I&#039;m new here.&nbsp; I have a dear friend who has been diagnosed with Cholangiocarcinoma.&nbsp; She is seeking options now...traveling to UCSF and Anderson for consultations.&nbsp; The best so far is a resection of 75% of her liver.&nbsp; Her tumor is deemed to be the size of a cantaloupe but she is only diagnosed at stage 1 or 2.</p><p>My friend is physically fit, 38 years old, and full of life and spirit.&nbsp; Any thoughts or words of wisdom would be most welcome as this is new to all of us (her friends) and family.&nbsp; One thing for sure...treatment will begin soon.&nbsp; she&#039;s had 2 biopsies and is being pushed for surgery in September.</p><p>Regards,<br />Mo</p>]]></description>
			<author><![CDATA[null@example.com (Mo)]]></author>
			<pubDate>Wed, 23 Aug 2006 03:23:57 +0000</pubDate>
			<guid>http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=874#p874</guid>
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