Surviving PseudoMyxoma Peritonei (PMP): NPO's (Nederlandse patientenorganisaties) bij NFK

Uit de schaduw

(English & update follows the Dutch texst)

Deze blog wil de zeer zelzdame kanker Pseudomyxoma peritonei (PMP) uit de schaduw halen en hopelijk een bijdrage leveren aan het redden van mensenlevens, zoals mijn leven is gered. Ik ben een PMP (Pseudomyxoma peritonei) survivor. Ik leef nu 3,5 jaar na mijn levensreddende operatie in juli 2008. Mijn ziektegeschiedenis ia lang, gecompiceerd, dramatisch. Het herstel is een zwaar, lang proces. Mijn genezing tot nu toe is een wonder.

Ik heb het ongeluk gehad om slecht en verkeerd medisch behandeld te worden, om last te hebben van ernstige medische missers. Ik heb het geluk gehad om gered te worden door een dapper en optimistisch chirurg, Prof. Aviram Nissan.

Doordat PMP zo zelzdaam is, kan de diagnose een moeizame zaak zijn. Mijn eigen ervaring laat zien dat ook de behandeling verkeerd kan verlopen. Daarom wil ik met deze blog mensen alert maken op signalen van het lichaam die onschuldig lijken maar tot een dodelijk afloop kunnen lijden!
informatie verschaffen, niet alleen over symptomen maar ook over de ziekte, over behandelmethoden, over gespecialiseerde ziekenhuizen en artsen in Nederland en het buitenland;

Ik hoop dat mensen die met deze ziekte direct of indirect te maken hebben (gehad), hun ervaringen willen delen middels deze blog. Samen kunnen we steun voor elkaar zijn en kunnen we een bescheiden toch zinvolle bijdrage leveren aan het behoud van het leven.

Ondertussen is het november 2016. Er is veel gebeurd waardoor ik de blog heb verwaarloosd. De PMP heeft mij intensief bezig gehouden....

In de volgende tekst kun je meer lezen.

De tekst schrijf ik in het Engels om voor meerdere mensen toegankelijk te zijn.

pellegorna@gmail.com

English

November 2016

This Blog is not only about my PMP. You can find here information aboud this rare cancer and treatment, about different aspects related to it and about Hipec centra and specialists.

After a long time I am writing again. A lot has happened since my first CRS/HIPEC in 2008 and since I have started, my blog in 2011.

When I look back, I now know that my pseudomyxoma story has begun many, many years ago. Long before the PMP has manifested itself in 2005.

In 2005 I had the first `explosion`: my appendix has exploded. They did not understand at the hospital what was really going on with me. After two risky weeks at the hospital they sent me home with nothing. As my pathology report was forgotten (!), there was no follow up, no tests. Nothing. but more and more problems within my body.

In march 2008 I finally had my diagnosis of PMP. In the meantime I got sicker and sicker, my belly grew visibly daily. I was hospitalised at the Sint Franciscus Gasthuis in Rotterdam, The Netherlands. Dr. Pegels who was my oncologist at that time, kept giving me chemo which didn’t do any good to me as I had low grade, DPAM. Although I got sicker and my belly extremely bigger and bigger, he kept giving me chemo. I was about to die.

Thanks to intervention of my very good friend Aya Breuer, we sent my medical file to prof. T. Yablonski –Peretz, at that time head of the cancer institute of the Hadassah medical center in Jerusalem. Prof.Yablonsky-Peretz took care of it urgently. She new the PMP and worked together with a very good surgeon who was specialized in PMP and CRS/HIPEC. This was prof. Aviram Nissan. Within 2 weeks, on july 21^st, I had my life saving CRS/HIPEC.

Prof. Aviram Nissan has saved my life!

Unfortunately I had a recurrence and had my 2^nd CRS/HIPEC in June 2013. Again, by prof. Aviram Nissan, in the Hadassah Medical Center. As they discovered this time aggressive cells, I needed chemotherapy post operation. 12 rounds…. This was a shock: I had 2 types of pathology! It felt very threatening. As all of PMP heroes, I went through this and I am still here. Though not without obstacles.

In 2015 I had recurrence again. This time it was low grade, DPAM. In march 2015 I had a local surgery. In May I had my 3^rd Hipec surgery, also this time by prof. Nissan, who is keeping working hard to save me. This time prof. Aviram Nissan used another chemo for de Hipec: Melphalan, which he has imported especially for me from the USA. This Melphalan is being used by dr. Sardi as an alternative to the traditional regimes.

This HIPEC was very heavy. Although I have recovered very nice at the hospital at the first sight, a very hard time followed, complications, hospitalization, another surgery, drains……

At the moment I am writing this, I am one and a half year further and finally feel beter.

I don’t a the stamina of a real healthy person, still need rest, but I am trying to do and enjoy as much as I can.

This journey of surgeries and recoveries has been very, very tough. Not only for me but also for my dear family and friends who were my caregivers. I have no words to express how greatful I am to them.
pellegorna@gmail.com