2. The first case was described by Carl F. Rokitansky in 1842. Werth in 1884 coined the term pseudomyxoma peritonei, describing it in association with a mucinous ovarian tumour. In 1901 Frankel described the first case associated with a cyst of the appendix.Source- Wikipedia.
3. The overall incidence is ~2-3 per million per year. It is slightly more common in women than men (male:female ratio = 9:11).Source Wikipedia.
4. Symptoms may include abdominal or pelvic pain and/or bloating, distension, digestive disorders, weight changes, increased girth and infertility. Source Wikipedia.
5. For the majority of people with true pseudomyxoma an adenoma is found in the appendix. Like many other tumours, pseudomyxoma can occur in people who lead healthy lifestyles.Source-The Christie
6. There are three approaches in the management of PMP- Watch and wait, Debulking and Cytoreductive surgery and peri-operative chemotherapy. Source-The Christie.
7. Cytoreductive surgery is an extensive procedure that lasts on average more than ten hours. If complete tumour removal has been possible, intraperitoneal chemotherapy has been given and the tumour is at the benign end of the spectrum, 50-80% will have 10 year disease free survival. Source-The Christie.
8. A picture of Pseudomyxoma Peritonei.
9. What does MOAS mean?-"Mother of All Surgeries!" - it refers to CRS/HIPEC - CytoReductive Surgery combined with Hyperthermic Intraperitoneal Chemotherapy), sometimes known as HIPEC or perfusion surgery. The phrase was coined by Sheri Telesh on her web site "Brian's Story" about her husband Brian who had PMP and has been cancer free for over 8 years. Source-PMP awareness.org.
10. Well known sufferers of PMP have been the late Audrey Hepburn (actress) who died of the disease, Steve Prescott –Rugby league player-St Helens,Wakefeild,Hull,Ireland and GB Lions Tourist.
well done Dave for keeping onn spreading the word....it needs to be done, and I take my hat off to you for doing it.
ReplyDeleteyour friend barbara from the Mac support group.
hugs.
Hi Barbara,
ReplyDeleteSorry I havent got back to you sooner. My evenings have been full this week with parents evening and generally running the family around here there and everywhere! My PC at work doesnt like me responding to comments on here either so I cant do it from there (it must be the security).
Thank you for your kind comments. They mean a great deal. I want to try and raise as much awareness as possible!
Look forward to hearing from you soon,
Dave
Hi Dave,
ReplyDeleteGreetings from across the pond. Just wanted you to know that my 1 1/2 year scans came back "unremarkable" (how I love that word). No sign of any mucus! Woo hoo!!! I have offered to be a contact person for anyone newly diagnosed here in Maine (there are more and more people showing up with PMP -- both because we have a great facility with skilled, knowledgeable staff and because it is being correctly diagnosed more often, perhaps). I hope that I can be of some help. Take care, Nancy
Hello Nancy,
ReplyDeleteGreat to hear from you, especially with news like that. I'm really pleased for you. It's also great to hear that you are supporting others through thier journey with PMP. I'm sure you will really help people and give them encouragement when faced with the prospect of the MOAS to see how well you have recovered. By sheer coincidence we are thinking of setting up a similar volunteer group here in the UK. To my knowledge nothing currently exsists where people can meet face to face or pick up the phone.It's all done via the web which can be very impersonal and I'm sure puts some people off.
Great news about your scan results! It's really made my day!
Speak soon
Dave
Hi Dave,
ReplyDeleteI have written a few things about PMP that I'd love to run by you but don't really want the whole world to see : ) How could I get it to you? Nancy
Hi Nancy,
ReplyDeleteI have just added a contact me form at the bottom of the page. This allows people to do just what you have asked, make contact without the whole world seeing whats written. Also it allows you to mail me direct without me showing all my e-mail adress.
If you send me a mail via this then we should be able to get some dialogue going directly via e-mail.
Kind regards,
Dave
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ReplyDelete