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  1. The theme of International Rare Disease Day 2014 is “Join Together for Better Care”. As patients and caregivers who have been impacted by peritoneal cancers (Appendix Cancer, Pseudomyxoma Peritonei, and other Peritoneal Surface Malignancies) our organizations have chosen to join together to share a simple message about these diseases.

    This year’s Rare Disease Day Ambassador, Sean Hepburn Ferrer, lost his mother Audrey Hepburn to peritoneal adenocarcinoma in 1993 at a time when she was offered little treatment or hope (http://ow.ly/u1CaE). Over 20 years after Audrey Hepburn’s experience, one of the greatest challenges with these diseases continues to be correct and timely diagnosis and access to the Standard of Care: cytoreductive surgery plus hyperthermic intraperitoneal chemotherapy (CRS/HIPEC). In many cases, symptoms are misunderstood for years, and patients are thus less likely to benefit from CRS/HIPEC. This treatment, unavailable to our patient population only a generation ago, has turned what used to be an almost certain death sentence into hope for thousands of patients around the world.

    We share the goal that every patient who presents with the common symptoms of these diseases – abdominal pain, increased abdominal girth, bloating, hernia,ovarian cysts or tumours, and ascites – receive correct diagnosis through tumour marker blood tests (CEA, CA 19/9, CA‐125) and CT scans and be afforded the option to be treated with the Standard of Care, CRS/HIPEC, by a qualified surgical oncologist before any other counterproductive and potentially damaging treatments are attempted.

    We all share the hope of achieving this goal, and by joining together in this statement and sharing this information, we strive for future patients suffering from these diseases to receive the better care that they deserve.

    Signing Entities
    Appendix Cancer Connection
    Be Unintimidated
    The Insurance Warrior
    PMP Awareness Organization
    PMP Research Foundation
    Pseudomyxoma Survivor

     

  2. We were extremely privileged to be invited to this year's Eurordis Gala Dinner held in Brussels on 25th February.  The event was a prestigious affair, attended by many distinguished guests and is one of the highlights of European Organisation for Rare Disorders' events to mark celebrations for International Rare Disease Day, which is held on the 28th February annually (or indeed the 29th February on each leap year).

    We were also thrilled to be joined by a very special guest in Mr Sean Hepburn Ferrer, son of Audrey Hepburn, who sadly passed from PMP 20 years ago.  Sean Hepburn Ferrer has been of great support to the charity, liaising personally with our CEO Dawn Green, and has been awarded the post of ambassador for Eurordis following Dawn's invitation to the post earlier last year.

    We feel that by attending this event and working closely with both Eurordis and Sean Hepburn Ferrer, we are further highlighting our awareness raising efforts and bringing Pseudomyxoma Peritonei to a both a European and wider International platform.

    Galagirls

    From left to right Elke Leivens, Kirsten Marshall, Dawn Green, Angela Brook, Katie Leonard, Farah Robinson, Megan Marshall.

  3. Our latest guest blogger is John. Today, he shares with us the story of his diagnosis.

    John shares his story with Pseudomyxoma Survivor

    I had no direct pain or no visible signs of any problems. The first real sign came after a scan.  In June 2012, I went to work as normal but by mid-morning I had a pain in my back on the right hand side.  This intensified throughout the morning to such an extent I could not sit down; the only relief came through walking.  No sooner had the pain started but it went away. Just before lunch it started again. This time it became even more intense. I drove home and I called out a doctor (it was a bank holiday here in France).  He came within 30 minutes and suspected I had kidney stones.  He gave me morphine and prescribed some other medication.  However by 5pm, the pain was so bad I contacted the health help line again who told me to go to the nearest hospital. By 6.15pm I was in Accident and Emergency, immediately treated and was hospitalised for three nights. During that time I had two scans, one ultrasound and several X-rays.

    John shares his story with Pseudomyxoma SurvivorEventually, after electric pulse treatment two stones, broke down and I passed them in my urine.  I was given an appointment for July 2012 for review.  In July, I went for a scan and the doctor in charge said I had something seriously wrong since she could see a “fog” or liquid around my liver and my spleen.  She advised me to go back to the hospital immediately.

    That afternoon I say the doctor who had treated me while in hospital and he confirmed that this liquid had been there on the first scan taken in June. He said it was probably due to inflation caused by the kidney stones and told me to wait for another 3 months and have an Ultrasound (a scan was considered too expensive).

    At the beginning of November 2012, I went for an ultrasound and again the doctor said there was something abnormal and told me to have a scan.  I had the scan the following month and I saw the consultant Doctor Crampon in January 2013.  The doctor in charge of the scan and my consultant still did not know what this liquid was. They did not think it was a cancer but they really had no idea.

    An endoscopy was organised and two procedures were done – both “up and down”.  The consult confirmed that there was no sign of cancer in the stomach or in the intestines. A lesion was found and removed as part of the procedure.

    At that point, the consultant decided to refer me to the oncology department at the CHU Estaing hospital in Clermont-Ferrand, France (Pole Digestif Hépatobiliaire). There I met a Professor Pezet and on inspection of the scan he suggested I had a condition called pseudomyxoma peritonei (PMP).  He explained that it was a type of cancer but to be sure he would do a biopsy.

    The biopsy was organised and it was to be carried out laparoscopically.  I was in hospital for 4 hours and 4 insertions were made. The operation lasted 40 minutes.  I was discharged the same day with a prescription for pain killers which came in useful since I was off work for 4 days because of the pain after the operation.  A further appointment was organised  to discuss the results and it was confirmed I had PMP. That was for April 15th, 2013.

    Mucin had been found around the spleen, the liver and as far down at the Douglas cavity.  A series of nodules had been found attached to the intestines and it was explained to me that part of these would have to be removed.  The Professor explained that he could not confirm the severity of the problem until I was opened up but did tell me that the worst scenario would be two operations:

    • The removal of the mucin, body parts and perhaps part of the colon/intestines.
      This could leave me with a colostomy for 2 months at which stage the procedure could be reversed. In addition, I would be given chemotherapy called heated intra-peritoneal chemotherapy (HIPEC) at the same time as the operation in order to “burn” any remaining cancerous cells. It was explained that this was done for approximately 90 minutes.
    • The reversal procedure to reconnect the intestines

    I was told it would take me four months to recuperate.  All in all it took eight months to diagnose but once I sJohn shares his story with Pseudomyxoma Survivoraw a cancer specialist in February 2013 the diagnosis had been immediate, baring confirmation.  The official date of confirmation was the 26/03/2013 when the report was written and I was told the 15/04/2013. I was 59 years old at time of confirmation.

    - John

    To read more survivor stories like John's, please visit our Survivors' Stories page.