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Pseudomyxoma Survivor

@pmpsurvivor.bsky.social
43 followers 16 following 82 posts

Pseudomyxoma Survivor is a charity (registered in England & Wales, no 1143642) that provides support, information, and advocacy for those affected by pseudomyxoma peritonei and other appendix cancers.

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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 02/09/2026
15 yrs of patient voice, trusted specialist relationships, research-led knowledge, credibility & community. Grateful to every patient, family member, supporter, volunteer, clinician, researcher & organisation who has been beside us #pseudomyxomasurvivor #CharityBirthday
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 12/05/2026
Happy #InternationalNursesDay, @HHFTnhs @thechristienhs We see you. We appreciate you. We thank you. PS hear about the difference you make every day for our community, supporting them through some of the hardest times. Thank you for your expertise, dedication & care.
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 30/04/2026
The Beacon Project a £1000,000 partnership btn @PMPSurvivor , @TheChristieNHS & @cruk_nbct to explore world's first blood test to detect PMP. Research that can transform lives. More: www.pseudomyxomasurvivor.org/globalnews/ #pseudomyxomaperitonei #appendixcancer
pseudomyxomasurvivor.org
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 20/03/2026
#Cancer52BigConversation, #rarecancers charities discussing UK cancer policy. The State of the Nation Report: No Cancer Too Rare, holding the government accountable & improvements for patients. Full report: e2236186-a9de-45db-b8f6-3f2d6db40cb4.usrfiles.com... #Cancer52 #PseudomyxomaSurvivor
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 29/10/2025
Maddy Lomas has set up our stand at #PSOGI2025! This year, PMP patient groups from 🇬🇧🇺🇸🇫🇷🇳🇱🇪🇸 unite to launch the International Barcelona Patient Manifesto, the first time our voices are heard together. Tim Brill speaks this afternoon! #PMPAwareness #AppendixCancer #RareCancer
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 22/10/2025
30th Oct, #psogi2025 in #Barcelona , patient associations will present the #PatientManifesto on #PeritonealMalignancies Using #patientvoice to highlight the needs, challenges, & hopes of those living with appendix cancers. #HealthAdvocacy #GlobalCollaboration
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 12/10/2025
To our incredible runners in the #RoyalParksHalf today #TeamPS - Francesco, Cardhelle, Josh, Jane, Emma, Kaelan, Andrew, Joe, Anthony, Nicola. #ThankYouRunners for every mile, step, bit of energy you’re putting in. #PMPAwareness #AppendixCancer #PseudomyxomaSurvivor
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 10/10/2025
#teamPS at the #RCGPAC25, #raisingawareness among 2,400 GPs. Maddy, Anne & Jo are ready to start conversations, share stories, & help frontline medical professionals recognise our ultra-rare cancer sooner. #AppendixCancer #PseudomyxomaSurvivor #RareButReal #EarlyDiagnosisMatters
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 25/09/2025
We are optimistic that Jess’s Rule could make a real difference for the PMP community. Find out more: www.gov.uk/.../jessica-.... #JesssRule #PMPAwareness #RareCancer #AppendixCancer #EarlyDiagnosisMatters #PseudomyxomaSurvivor
gov.uk
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 22/09/2025
“How are you doing?” can be overwhelming, the answer might be complicated/exhausting to explain. “How was your day?” allows space for the good/hard, without pressure. Words matter, compassion lives in subtleties. #PMPAwareness #RareCancer #AppendixCancer #PseudomyxomaSurvivor
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 21/09/2025
Two different trials that may offer alternative treatments for PMP🤞in the future. We’ll keep you updated as more information emerges on either trial. #PMPAwareness #AppendixCancer #PseudomyxomaSurvivor #BromAcTrial #PIPACTrial #RareCancerResearch
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 12/09/2025
Jane & Emma are running #RoyalParksHalf, 12 Oct, #InMemory of Jane's Mum who died from PMP. Thank you for doing this & honouring your mum. Support them here - www.justgiving.com/page/kate-bo... #teamjane #PMPAwareness #PseudomyxomaSurvivor #FundraisingForHope #RunForACause #TeamJane
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 10/09/2025
This is a major step forward in the long journey towards new treatment possibilities for PMP. 🤞 #Pseudovax #PMPAwareness #AppendixCancer #PseudomyxomaSurvivor #ResearchMatters #ClinicalTrials #HopeThroughResearch
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 01/09/2025
To everyone affected by appendix cancer & PMP: we see your strength. We’re with you & we’ll keep raising awareness not just in August, but every day after. #AppendixCancerAwareness #PMPAwareness #RareCancerCommunity #TryAgainTomorrow #EndOfAwarenessMonth #AwarenessEveryDay
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 30/08/2025
At just 12 years old, Flynn is shaving his hair on 27th Sept to raise money for PS. His mum, Tracy, was diagnosed with PMP when he was only 9. 👉 Support Flynn’s fundraiser: gofundme.com/.../help-fly.... #FindYourBrave #PMPAwareness #ShaveForACause #TeamFlynn #LittleHeroBigHeart
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 29/08/2025
Kay is running the Great North Run 2025 for us! A champion for PMP rehab needs, she’s helped shine a light on how vital physio + recovery support are after surgery. Let’s cheer her on! Support Kay: ajbellgreatnorthrun2025.enthuse.com/pf/kay-stand... #GreatNorthRun2025 #PMPAwareness #RunForACause
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 29/08/2025
Sue is running the #GreatNorthRun2025 she is a supporter & advocate #PMPAwareness. She has hosted online #physioforPMP, helping them regain strength & confidence. #ThankYouSue ajbellgreatnorthrun2025.enthuse.com/.../sue... #AppendixCancer #PMPSurvivor #RunForACause #SupportOurSupporters
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 26/08/2025
This #appendixcancerawarenessmonth, we pause to honour those we have lost to #appendixcancers #PMP. Their voices continue to echo in our hearts & actions. #Inmemory, we recommit to raise awareness, fund research, & support those living with cancer. #LifeAndLoss #PMPRemembrance
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 24/08/2025
"Are there any research trials for appendix cancer/pmp?" Is one of the questions we’re asked most. Trials are limited & costly. Our supportive community allows us to fund seed-level research. You can donate here www.pseudomyxomasurvivor.org/donate/ #RareCancer #appendixcancerawarenessmonth
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 23/08/2025
"When you hear hoofbeats, think horses, not zebras." A phrase medical students use to consider common diagnoses before #rarecancer. However, for some patients, this mindset can lead to misdiagnosis, sometimes it really is a zebra! #ZebraStrong #RareDiseaseAwareness #PMPZebra
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 22/08/2025
PMP, a rare & complex disease, requiring specialised treatment. Early referral to an expert can make a significant difference in outcomes. Patients advocating for their own healthcare, is pivotal. #patientadvocacy #PMPExpert #pmpCare #CRSHIPEC #SpecialisedTreatment #appendixcancerawarenessmonth
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 20/08/2025
There are actually differ types of #appendixcancer & #pseudomyxomaperitonei, some are more aggressive. Early diagnosis & access to specialised care make all the difference. Raise #AppendixCancerAwareness #PMPAwareness, spark conversation, & support those facing #RareCancer
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 20/08/2025
Even during Appendix Cancer Awareness Month, we’re allowed to laugh. In fact, sometimes we need to. Here’s to strength, science, and still finding reasons to smile. #AppendixCancerAwareness #RareButReal #LaughterIsMedicine #PMPAwareness #PseudomyxomaPeritonei #StillSmiling #AppendixCancer
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 19/08/2025
💡 These tests are key to early detection and proper treatment planning. If symptoms persist and answers are unclear, ask about further investigations. #AugustAwarenessMonth #PMPDiagnosis #AppendixCancer #TumourMarkers #KnowTheProcess #EarlyDetectionMatters
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 16/08/2025
This Appendix Cancer Awareness Month, we recognise the complex path to diagnosis. That’s why our message is simple but powerful: Trust your gut. Listening to your body can make all the difference. #PMPAwareness #AppendixCancer #AugustAwarenessMonth #KnowTheSigns #TrustYourGut
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 15/08/2025
Early detection can save lives, push for answers if you have abdominal symptoms that can not be explained. #PMPSymptoms #AugustAwareness #EarlyDetectionMatters #AppendixCancerAwareness
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 12/08/2025
All the way from Gibraltar... to support us! @KaelanJoyce is determined to raise awareness and funds by running the #RoyalParksHalf. We have a few places - bit.ly/45R1vYv #AppendixCancer #AwarenessIntoAction #TeamSurvivor Support Kaelan here - www.justgiving.com/fundraising/...
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 11/08/2025
This is Appendix Cancer Awareness Month. Awareness without action is worthless. Real change happens when awareness leads to action. Share info, support patients & research, push for earlier diagnoses & better treatments, your involvement matters. Learn. Share. Donate. Advocate.
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 07/08/2025
#Bex is doing a fantastic job for #pseudomyxomaAwareness. The BBC - www.bbc.co.uk/news/article..., & coverage on BBC Radio Cumbria & Look North. This is for the @chrishoy #TourDe4, raising funds for @PMPSurvivor. Cheer her as she rides to make a difference & inspire! #RareDiseaseAwareness #TeamBex
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 05/08/2025
This August is Appendix Cancer Awareness Month—an initiative started by us in 2013. Throughout the month, we’ll be raising awareness about the disease, symptoms, diagnosis, treatment options, & what the future holds. Please share widely. #whatispmp #pmpexplained #augustawareness
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 04/08/2025
This August, #PMPSurvivor #acpmpresearch #alliance82039 #pmppalsnetwork #AssocAmarape #APeritoneum stand together to increase understanding & support for people affected by appendix cancer & the related condition pseudomyxoma peritonei (PMP). #appendixcancerawarenessmonth
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 01/08/2025
In 2013, we established Augus as PMP Awareness Month. It has evolved into Appendix Cancer Awareness Month, garnering recognition from organisationss & individuals around the globe, we couldn't be more delighted. #pseudomyxomasurvivorcharity #pmpawarenessmonth #appendixcancerawareness #rarebutreal
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Reposted by Pseudomyxoma Survivor
Peter Lloyd @maltapar.bsky.social · 11/07/2025
@pmpsurvivor.bsky.social
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 31/07/2025
We have places but you need to be quick! The Royal Parks Half 2025, is on the 12th Oct. Would you like to run & fundraise for us? The route through London's parks has a fantastic atmosphere. @RoyalParksHalf @pmpsurvivor Apply here - www.pseudomyxomasurvivor.org/.../.
pseudomyxomasurvivor.org
Royal Parks Half Marathon 2023 • Pseudomyxoma Survivor
It’s a beautiful run that takes in historic landmarks of London including Buckingham Palace, the Houses of Parliament, and Trafalgar Square.
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 29/07/2025
🎁🦓 Something rare is hiding inside… August is Appendix Cancer Awareness Month. Stay tuned to unwrap the facts, share the stories, and help us raise awareness of this often-overlooked cancer. #AppendixCancerAwareness #PseudomyxomaPeritonei #ZebrasNotHorses #RareButReal #UnwrapTheTruth
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 17/07/2025
Still have places in the Royal Parks Half 2025, 12th Oct. Would you like to run & fundraise for PS? The route through London's parks has a fantastic atmosphere, as many past PS runners would agree. More details here - www.pseudomyxomasurvivor.org/.../royal-pa...
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 13/07/2025
At PSOGI Congress 2025 we are introducing a Patient Charter. Driven by Santiago Gonzalez Moreno, MD, Madrid, & Sandra Lara de Liz, #Asociacionperitoneum, in collab with #ACPMP, #Amarape, #MesotheliomaUK, #PALS, #PMPContactGroup & #pseudomyxomasurvivor. #psogi #rarecancer
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Reposted by Pseudomyxoma Survivor
Peter Lloyd @maltapar.bsky.social · 01/07/2025
Great news that the rare cancers bill passes another stage - thanks again to @drscottarthurmp.bsky.social for this. @elloydmalta.bsky.social @pmpsurvivor.bsky.social
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 08/07/2025
A cancer diagnosis is unforgettable; you don't forget “I’m afraid we found cancer.” A 2003 study by Kessels found 40-80% of medical info is forgotten, & 1/2 of what is remembered is inaccurate. Write questions before appoints & bring someone to record the answers. #pseudomyxomasurvivorcharity
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 30/06/2025
PS are delighted to welcome Maddy Lomas to the Board of Trustees. A PMP patient herself, she is passionate about helping younger patients navigate a cancer diagnosis. ABB is smiling, and we look forward to working with you Maddy. Susan, Anne, Clare & Tim - PS Board of Trustees.
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 23/06/2025
A campaign that amplifies the work of small charities across the UK. Join PS, whether through fundraising, funding research or raising awareness, in continuing our invaluable work. #smallcharitiesweek2025 #NCVO #pseudomyxomasurvivorcharity #pseudomyxomaperitoneiawareness
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 22/06/2025
Our logo may make more sense after reading this! #pseudomyxomasurvivor #pseudomyxomaperitonei #appendixcancer 😂
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 22/06/2025
Being diagnosed with cancer is scary enough, imaging what PMP/appendix cancer patients feel when they hear about the current treatment for their cancer! Yet plenty of us have survived & thrived. #pseudomyxomasurvivorcharity #appendixcancerawareness #pseudomyxomaperitoneiawareness
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 19/06/2025
Us humans are a complicated lot! Research indicates that patients often delay discussing their most pressing health concerns during a visit to their doctor. It can be the last thing mentioned as they walk to the door! #pseudomyxomasurvivor #appendixcancer #pseudomyxomaperitonei
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 19/06/2025
Research indicates that patients often delay discussing their most pressing health concerns during a visit to their doctor. It's usually the thing that they mention on their way out of the consultation! #pseudomyxomasurvivor #appendixcancer #pseudomyxomaperitonei
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 19/06/2025
PMP tumours grow & burst through the wall of the appendix into the abdominal cavity. These tumours can secrete a jelly-like substance called mucin. A build up of mucin lead to the characteristic ‘jelly belly’ & compresses vital organs. #pseudomyxomasurvivorcharity #appendixcancer
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 16/06/2025
PMP in its early stages has few symptoms. It starts in the appendix, more rarely, the bowel, ovary or bladder. It affects♂️&♀️of all ages. The tumour polyp grows & bursts through the wall into the abdominal cavity, this is when the patient first realises that there is a problem.
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 14/06/2025
The challenge of a rare cancer that many are unfamiliar with, & we also need to master its pronunciation! Pseudomyxoma peritonei is pronounced “sue-doh-mix-oh-muh pary-ih-ton-nee-i” & often abbreviated to PMP. #pseudomyxomasurvivorcharity #pseudomyxomaperitonei #appendixcancer
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 12/06/2025
A concerning trend of appendix cancer being diagnosed in younger patients. Those born in the mid 1980s 4X more likely to receive a diagnosis of ac compared to those born in the 1940s. www.acpjournals.org/doi/10.7326/... #pseudomyxomasurvivorcharity #appendixcancerawareness #pseudomyxomaperitonei
acpjournals.org
Birth Cohort Effects in Appendiceal Adenocarcinoma Incidence Across the United States | Annals of Internal Medicine
Background: Incidence rates of appendiceal adenocarcinoma (AA) are increasing across all age groups in the United States. Birth cohort patterns of AA can provide new, etiologic clues into increasing r...
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Pseudomyxoma Survivor @pmpsurvivor.bsky.social · 09/06/2025
Volunteers Week concluded last week, we couldn't let it pass without acknowledging our own wonderful volunteers (too many to name!). Thank you each & every day for all that you do. #pseudomyxomasurvior #appendixcancer #pseudomyxomaperitonei #GratefulForVolunteers
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