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Keep in touch with what is going on at Pseudomyxoma Survivor.  If you have something you wish to share, please do not hesitate to contact us.

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  1. Pseudomyxoma Survivor are proud to have sponsored the recent PMP Patients' Meeting which was held in Basingstoke in May 2013.  The first meeting of its kind in the UK, attendees heard sessions from Dr Paul Sugarbaker and patient advocates Amani Albedah, Dave Mason and Pseudomyxoma Survivor's very own Dawn Green as well as attending breakout sessions which covered a range of topics.

    Dr Paul Sugarbaker attends the PMP Patients' Meeting in Basingstoke, May 2013Dr Sugarbaker spoke of the history of PMP.  He introduced us to the history of the Peritoneal Surface Oncology Group International (PSOGI) and explained that "psogi" is also the Japanese for 'clear'.  He talked through the different techniques of administering chemotherapy - during surgery and post, intravenous and intraperitoneal - and the efficacy of these methods.  The key message was that survival statistics show a direct correlation to complete cytoreduction during surgery (1). 

    He also introduced the topic of long-term intraperitoneal chemotherapy, a treatment not usually seen in the UK.  Dr Sugarbaker described a study carried out with ovarian cancer patients where the quality of life (QOL) was significantly worse in the intraperitoneal-therapy group before cycle 4 and three to six weeks after treatment but not one year after treatment (2).

    Dr Sugarbaker then went on to talk about the history of heated intraperitoneal chemotherapy (HIPEC) with a key point of interest being the designation of the pseudomyxoma peritonei treatment center for the United Kingdom at the North Hampshire Hospital, Basingstoke, England in 1998.  He explained the use of the Peritoneal Cancer Index (PCI) where a score is given as a summation of scores for areas of the abdomen based on tumour size and described studies which showed survival by PCI for both adenomucinosis and mucinous carcinoma.

    We were then introduced to the CC score which is used after surgery:

    • CC0 - No disease
    • CC1 - tumours present but less than 0.25cm
    • CC2 - tumours between 0.25cm -> 2.5cm
    • CC3 - tumours larger than 2.5cm

    and again, Dr Sugarbaker described studies showing survival by CC for both adenomucinosis and mucinous carcinoma.

    Dr Sugarbaker then told us of the development of Peritoneal Surface Oncology treatment centres in the UK.  The importance of a treatment center in the United
    Kingdom for pseudomyxoma peritonei patients was made clear. In 1998 this became a reality with the establishment of the centre in Basingstoke.  In 2002 a second center was established under the direction of Sarah O’Dwyer and colleagues in Manchester, UK. Other designated treatment centres have appeared throughout Europe.

    Dr SuDr Paul Sugarbaker attends the PMP Patients' Meeting in Basingstoke, May 2013garbaker described the incidents that cause issues following surgery and those which cause patients to have to have a further operation.

    Of most interest to many attending was Dr Sugarbaker's discussion of the future direction for patients.  He summarised these as follows:

    • Abandon the watch-and-wait policy with referral of symptomatic patients to a peritoneal surface oncology centre.
    • The preoperative treatments are now bidirectional with some chemotherapy agents for use with heat targeting to the peritoneal cavity - this is the use of both intravenous and intraperitoneal chemotherapy before surgery. Others as part of a hyperthermic intraoperative intraperitoneal chemotherapy regimen (HIPEC).
    • Neoadjuvant treatments (treatments that are given before a main treatment) are now being explored for gastric cancer, presenting an exciting new direction for a group of patients with very poor prognosis.
    • Perioperative (during a surgical procedure) chemotherapy is being moved to the primary management of gastrointestinal and gynecologic cancer.

     

    (1)Youssef et al. Operative findings, early complications, and long-term survival in 456 patients with pseudomyxoma peritonei syndrome of appendiceal origin. Dis Colon Rectum 2011

    (2) Intraperitoneal Cisplatin and Paclitaxel in Ovarian Cancer Armstrong DK et al. NEJM 2006

  2. Today, Iain, from our Support Group, shares his story:

    Pseudomyxoma Survivor Iain shares his storyFor well over a year I noticed my belly steadily getting bigger though I didn't seem to be eating any more than normal. I of course tried dieting a few times but when I didn't lose weight I gave up pretty quickly.


    At work I used to eat at my desk and started noticing when I brushed down the crumbs (mucky pup!), I felt a pain right down the surface of my chest but again didn't think it was more than just getting fat.  But around October 2012, this pain in my chest began bothering me all the time and found it very difficult to tie my shoe laces so only then did I go to the Doctors.

    My Doctor thought I might have a hernia and sent me to Ninewells Hospital in Dundee for an Ultrascan.  I got this appointment within a week and was seen first by a student who could not explain what she saw so called the nurse who also had a look.  She also couldn't explain what she was seeing so then called a doctor who explained that there was something there obscuring the view but again he had never seen this before and recommended my own GP send me for a CT scan which he did.


    I had the CT scan early December and waited 2 weeks for the results. I was surprised when Mr Polignano at Ninewells Hospital wanted to see me the following week to discus the results but still not fearing anything serious was wrong I went on my own to be told I had this rare cancer PMP which needed the huge operation you all know about.

    My operation lasted 12 hours followed by the Chemo Pack for another 2 hours and eventually got to Intensive Care after midnigh.  I only spent one day in Intensive care and was taken to the High Dependency Unit for a further 5 days. During this time I have to admit I had short periods of depression and wanted to die as I felt so bad but luckily these feelings didn't last long as the staff were marvellous and made me as comfortable as I could possibly get.

    I was then transferred to a private room on a ward where i stayed for a further 2 weeks.  I was given a pass to go home for a long weekend but was let back home as they could see I was eating much better at home and getting much more exercise that I was on the ward.
    So I was in hospital for just over 3 weeks.

    When I was initially told I don't think I really took it in; I had a wee cry in the car and went back to work. It was difficult telling others as my mother, partner, friends and family, seemed to take it quite bad.  Apart from one day, 2 days after I was told, I've never really got upset whilst everyone around me acted like they were going to lose me.  I did get upset when my original operation was cancelled as I lay on the bed sedated waiting for the operation to begin, and then to receive a letter saying I had to wait a month until the new date. I did get chest pains which my Doctor said was acid reflux which I am prone too but I think it was also anxiety.  I do get very emotional about anything and should really stop watching programmes like 'NHS In A Day' as I always end up in tears. This emotion is not in anyway sympathy for my own condition as I have always accepted I have no control over it and want to get on with a normal life.

    I feel quite good at the moment but want to push on the recovery so I can get back to work. I'm an impatient patient!!  My stoma is soon to be reversed and I can't wait for that.  I worry about catching any colds or worse off people in supermarkets etc. but will not become a hermit.

    My advice to tohers is to stay positive whilst recovering as it does help. As one doctor doing his daily rounds told me,

    " We can help you overcome any physical problems but It's up to you to keep your mind positive." and he was right.

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

  3. Pseudomyxoma Survivor's new logoYou may have noticed that our website and logo has had a bit of a facelift. 

    Our logo with the orchid is much loved by us here at Pseudomyxoma Survivor but we knew that it needed some rework but were unsure what exactly what was required.  British Design Experts quickly provided us with some concepts within our brief and helped us to solidify our requirements.  After looking at the initial ddesings, we knew what it was that we wanted and we pretty quickly got to it.


    If you are looking for a quick turnaround and a professional approach, then that is what we have received from British Design Experts; patience, despite our numerous tweaks to the design.  With grateful thanks and hopes that we may work together in the future.


  4. Today's guest blogger is Stacey who tells us why she and Antje took part in The Gauntlet.

    Pseudomyxoma SurvivorWe did it!

    We ran THE GAUNTLET 5.8k race at Mucky Races!

    Considering it had snowed only the week before, the weather was kind to us.  It was sunny but fresh.  However, it also meant the water along the course was very high and also very cold so our nerves were showing a little.  Well, mine were as it was my first time taking part in a Mucky Races event, Antje seemed quite calm about it all having ran a 'Guts and Glory' event previously.   We all gathered for a warm-up to music organised on the day then progressed to the start line.

    muckygirls1We're off!

    The first thing was to run past Spains Hall,  Elizabethan country house near Finchingfield in Essex, and I have to say, it's absolutely beautiful.  This was the civilised part of the race, it got seriously mucky from here on in.  Next up, running through the woods and scrambling over ditches.  All pretty dry so far...

    Then we got to the lake.  We all took it in turns to wade through the edge of the lake with water up to our waists.  Antje and I decided we'd hold hands through all the tough obstacles and it was a good tactic as it was pretty slippery.  After another run through the grounds and out into the countryside, we came to a stream where some locals had set up a little spot in the sunshine, enjoying a pint and a giggle at the crazy muddy people trekking past their house.  We could really have done with a pint at this point! Ha ha!

    Our task was to 'run' across the stream then on to the obstacles the other side.  We had to balance along a beam, go under a rope cargo net then 'hop' through a load of tyres.  All energy sapping stuff.  More running then on to a deep ditch.  We had to cross it so many times I lost count! It was so deep sided and by this point as so many people had trundled through it, was so slippery getting out of either side that Antje and I stopped for ages helping out other ladies who were also stuck.  It wasn't the most glamorous of situations to be in, we're all covered in mud being pushed and pulled all over the place, but I've never laughed so much.  It was brilliant! 

    Getting mucky for Pseudomyxoma SurvivorAfter the ditches came the wall. It was a series of huge hay bales towering over six foot.  After more pushing and pulling and a few leg ups we got ourselves and others up and over and then on to more running through the woods.  Then the mud pit. This part of the course was SO muddy, we sank down past our knees the second we tried to walk on it. So crawling it was then! At this point we were starting to be lapped by the crazy 12k runners. As so many people had passed through the mud pit before us, it had got so bad the course guides advised we crawled around the edges. A few people were now stuck in the middle of the pit and I think they were seriously considering having to pull people out by a rope!  Several people lost shoes at this point but Antje and I had taped ours to our feet. 

    More lakes, more pits, more ditches and more nets to crawl under until the final obstacle.  The raft.  It was floating on a pond that was about waist height and we had to dive under it through the muddy water.  It was quite disorientating and SO cold it took your breath away.  We were both so proud of ourselves for doing it though. A final push took us to the finish line looking wet and bedraggled but surprisingly clean after our little dip.  Yay, we did it!  Participants were given a goody bag and a t-shirt (which I now wear with pride at bootcamp) and we trundled back to the car to dry off, warm up and refuel.  Exhausted and bruised but happy.

    We dedicated our sponsorship to Pseudomyxoma Survivor as our lovely friend Claire has been fighting PMP for some time.  We felt that although there are so many deserving charities out there and many people pick a large well known one, this one was close to our hearts and Pseudomyxoma Survivorwe wanted to raise as much awareness as we could. The support and friendliness of Pseudomyxoma Survivor has been so important for Claire and as there is so little aid or awareness of this type of cancer we felt we just had to help in any way we could. What better way than to get MUCKY?!

     - Stacey. x

    Getting mucky for Pseudomyxoma Survivor

    if you would like to make a donation, please visit Stacey and Antje JustGiving page.