Pseudomyxoma Survivor is proud to introduce a new online community. In partnership with EURORDIS and NORD, two of the world’s most established rare disease patient organisations, we’ve created a place where you can connect with others from around the world who know what you’re going through.
Among the many exciting features our new community offers, you can:
- Participate in discussion groups – or even just read what others have to say
- Request human translations of forum posts and comments to connect with others who don’t speak your language
- Post a personal profile – share as much or as little as you’d like about yourself
- Post personal photos or videos (optional)
- Invite other members to be friends
- Share your story through your profile; then it will be translated into 4 other languages
- Read other stories from people in different countries to learn about their experiences
You’ll also find coping strategies and answers to your questions, as well as vital support, compassion, encouragement, and inspiration from others sharing experiences similar to yours. Upon joining, you’ll have complete control of your privacy options and can communicate with others like you in a safe, secure environment where your personal information is not shared with 3rd parties.
We encourage you to join the community and start connecting with others across the globe. Registration is free and only takes a minute. We will still be supporting our Facebook group, unimaginable to think otherwise!
To get started, please visit https://www.rareconnect.org/en/community/pseudomyxoma-peritonei and click on the “Join Now” button.
The team at RareConnect from EURORDIS and NORD would love to hear your thoughts on the new community, and are happy to answer any questions you may have – please feel free to contact [email protected]. We look forward to seeing you there soon. You can also visit our RareConnect page for more details, including some guidelines from the team at RareConnect and a link to the Terms and Conditions.
I had the operation two years ago I have had nothing but problems with my bowels. Twice a month I wake up around 1 o’clock with severe pains in my stomach. I start and vomit all night with a temperature of 100-101. Is anyone going through this? If so what did your doctor do?
Did you get to the bottom of this Karen? I have had a similar issue.
I have Peritoneal Matesis-Colorectal cancer Stage IV ….does anyone else have this? I have been elim ate from HIPAC and I am now recommended to have chemo graph as cancer seems to reduce based on this. Does anyone have any experiences, thoughts or comments they could pass along to me?
Hi my wife is suffering from pseudomexoma peritonei. She has been operated twice with in 1 1/2 year. The last operation was done on 25 April 2018 but with on 2 months, it has come back. Her disease is very aggressive and she is going down day by day. Can anyone advise what can I do. Will normal chemo help her?
Sorry to hear of your wife’s issues. We are a patient and caregiver lead organisation and cannot give advice on specific cases. IV or oral chemo works for some patients and not for others – we’re all individuals as patients and a combination might not work for one person but may work well for someone else.
I’m reaching out as someone with pmp/appendiceal cancer. I underwent surgery but we were not able to get much of the tumor so we turned to chemo, underwent 28 treatments and am now trying to chart what comes next. Another surgery is not an option due to size and placement of tumor across abdomen. Anyone else in this boat? What have you heard of or explored for options??