Talk:Pseudomyxoma peritonei

Link
UK PATIENT SUPPORT GROUP AND REGISTERED CHARITY 1143642 http://www.pseudomyxomasurvivor.co.uk


 * Personal accounts are poor sources of information. Not everyone may have the same experience. It is also not a personal story but a blog. If you have information about PMP, with good references, please be so good as to work it into the article. Just linking to the blog is not the same as imparting information. JFW | T@lk  15:21, 9 September 2005 (UTC)


 * I agree that the information should be incorporated into the Wikipedia entry -- it has an extraodinary amount of detailed information not available elsewhere. This is the link, for those who are interested in taking on the task:  http://appendixcancer.blogspot.com/ Bollar 16:56, 25 August 2007 (UTC)

I disagree that personal accounts are poor sources of information. When I was diagnosed with PMP in 2006 and had to undergo extensive major surgery I had no idea - and my surgeons were not forthcoming either - about the nature of PMP. The surgeons did not even use the term PMP; I was told that I had a mucinous urachal adenocarcinoma, which my oncologist told me later was a rare sub-variety of PMP. My wife and I trawled the Web and found many useful sources of information, most of which were people's personal accounts. I subsequently set up my own survivor's page at http://www.camsoftpartners.co.uk/pmpsurvivor.htm. This page, which is in the form of a diary, receives around 500 visits per month, and I get around a dozen emails each month from PMP patients and carers. I list several blogs and other resources at the end of the above page. I would go so far as to say that personal blogs and PMP discussion lists are now my main sources of information. The best single source that I have found is written by Carolyn Langlie-Lesnik, a qualified nurse who is also a PMP patient: http://www.appendix-cancer.com/ GroovyGuzi (talk) 12:13, 22 April 2011 (UTC)

I have to agree with the user above. In the case of Pseudomyxoma Peritonei (PMP) being such a rare cancer valuable information is often hard to come by and difficult to understand. As a PMP sufferer myself (diagnosed May 2009) I too have written a blog that details my experience from diagnosis through to current day to give a real life account of life with PMP. I also include factual articles that explain in laymans terms particulars regarding both the disease and its treatment.Factual data always is backed up by its source. The blog has proved very successful with 500-1000 hits per month and many positive feedbacks from sufferers throughout the world. My blog can be found at http://cavecrawlerstory.blogspot.com/ (Cavecrawler101 (talk) 13:22, 25 January 2012 (UTC))

I also feel that given the distinct rarity and nature of this disease it is invaluable to be able to network with fellow patients, thus alleviating the feeling of isolation, and creating a sense of empowerment.When diagnosed with Pseudomyxoma Peritonei (PMP) in January 2008 and subsequently being told I had less than 3 months to live due to the lack of local medical knowledge of the disease and its clinical presentation, I found myself in a situation where I had to rely on internet resources to find my own treatment options. Having recognised the distinct lack of awareness, emotional and practical support, I founded a UK registered charity, its main aims and objectives being to provide a support network for fellow survivors and caregivers worldwide, to raise awarenss amoungst both patients and medical proffesionals and to raise funds towards much needed research. Since its first appearance on the web in August 2010 the website has evolved and grown hugely in popularity, has established links on both Macmillan and Cancer Research UK's Pseudomyxoma Peritonei (PMP) information pages and enjoys an average of over 5,000 visits per month with a staggering 31,017 in the past year alone.(April 2011 to March 2012) Through my work with the charity I have established links with the Department of Health, NHS cancer networks,have been invited to be consulted on draft papers as a registered stakeholder with the National Institute for Clinical Excellence (NICE) and currently working on a project to develop the content of patient information pathways currently being drafted by the National Cancer Action Team (NCAT).I think it is important to stress that the main success of the charity and the site is due to the invaluable help and support I receive from fellow patients and caregivers all over the world, without such support and collaborations I doubt the charity and its concrete roots would have been established in such a timely and spectacular manner. More information about the charity and how you can get involved, including advice, support and fundraising opportunities can be found by visiting http://www.pseudomyxomasurvivor.co.uk Oneinamillionpmp (talk) 19:55, 18 March 2012 (UTC)

In addition a UK based (but not UK limited) patient led discussion forum has been set in in conjunction with The Christie Hospital NHS Foundation Trust. The forum can be found at

http://www.pseudomyxoma.co.uk —The preceding unsigned comment was added by 62.136.67.203 (talk) 16:04, 22 April 2007 (UTC).

The stories of many UK survivors can be found on our website http://www.pseudomyxomasurvivor.co.uk Oneinamillionpmp (talk) 18:51, 18 March 2012 (UTC)

UK REGISTERED CHARITY - PSEUDOMYXOMA SURVIVOR
In August 2010 UK patient and survivor of Pseudomyxoma Peritonei Dawn Green established a UK registered charity Pseudomyxoma Survivor. The charities main aims and objectives are To provide a support network for fellow survivors worldwide. To raise awareness of the disease amoungst both patients and medical professionals. To raise funds to donate to research into pseudomyxoma peritonei. For further information and to contact Dawn and other survivors please visit

http://www.pseudomyxomasurvivor.co.uk Oneinamillionpmp (talk) 20:04, 18 March 2012 (UTC)


 * Please do not remove the DMOZ link, much less replace with WP:SPAM.Novangelis (talk) 22:42, 18 March 2012 (UTC)

For the Rare Diseases Day editathon 2016, I was going to add the National Organization for Rare Disorders PMP site to the external links http://rarediseases.org/rare-diseases/pseudomyxoma-peritonei/ but I see the note that no one should add more links without posting on the talk page. So please add it if you think it's helpful. I also added the ORPHA number to the infobox (ORPHA26790) but it doesn't link to the right page when I click on it http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=8765&Disease_Disease_Search_diseaseGroup=Pseudomyxoma&Disease_Disease_Search_diseaseType=Pat&Disease(s)/group%20of%20diseases=Pseudomyxoma-peritonei&title=Pseudomyxoma-peritonei&search=Disease_Search_Simple so please fix that (or delete it if it isn't helpful). Uncommon fritillary (talk) 00:00, 1 March 2016 (UTC)

MRI
A family member was just diagnosed by MRI so the statement about MRI not being used seems outdated. 2.27.52.146 (talk) 18:57, 4 May 2022 (UTC)
 * Although some might be diagnosed during an MRI, the standard of care for PMP is to use a CT scan as a primary modality, so I think it is fair to leave this "as is" for now. I hope your family member is able to experience a durable cure. Good luck! Anfornum (talk) 12:27, 5 May 2022 (UTC)