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Roll Call - PPC

JulieL's picture
Posts: 141
Joined: Jan 2012

Hi All


On the Ovarian site they are doing a roll call of people with a description of how they were diagnosed, when, treatment, outcomes, etc etc.   I suggest we do the same as often when I look up a postee's details there are none.   This is such a rare cancer the more we can share information the more we can help each other.


My details are:

Age 64

Diagnosed December 2011 with a collapsed lung and the surrounding fluid showing cells pointing to PPC.  I immediately had a pleurodesis (attaching the lung to the outer wall to prevent further fluid to accumulate there and 7 rounds of carbo/taxol.  After the fourth round I had debulking surgery involving the removal of the omentum, ovaries and other tissue.   (I had a hysterectomy a number of years ago, also a total colectomy - removal of the large bowel - when I was 27 y o.  My CA125 then had fallen to 21 (June 2012) from a high of 653 (December 2011).   I was told I was in remission then but on returning from a wonderful overseas holiday 2 months later my CA125 had risen to 209 and 2 weeks later 360 and 1 week later 459!   I then started on Doxil (Caelyx here in Australia).   I had awful side effects with burning and blistering hands and feet and chemical burns to my back, arms and thighs and to top it off increasing CA125.  My oncologist took me off it after 3 rounds and I have now started Gemcitabine - 1 round so far - and already a fall in my CA125 of one-third.  My second round starts this week and I have high hopes for it to continue the good work!

Julie, Australia

seatown's picture
Posts: 262
Joined: Sep 2012


What a great idea, Julie! I've found reading about other patients' treatments and experiences very useful.

As for me -- as I've said before, the course of my illness can be found, blow by blow, at


Click on "journal," then sort by "oldest to newest," and you'll find my story in excruciating detail. The only thing not there is my age, which I'm still vain about. But I'm 3 years older than you!

westie66's picture
Posts: 642
Joined: Jun 2010

Hi all:  I think most of my story is on my personal data space, but ... Diagnosed with gallbladder cancer October 2009.  Removal of gallbladder, its tumour, and part of my liver April 2010.  Told in May 2010 that the cancer had spread to the peritoneum.  Had 12 treatments of gemcitibine plus cisplatin.  Tolerated that really well.  But it didn't do much for the tumours on the peritoneum (although they were pretty stable).  In 2011 had 12 treatments of folfirinox (oxaliplatin + irenotecan + 5FU) - terrible side effects but it did halt growth.   Tumour identified on my liver.  Had three more treatments of folfirinox in April 2012 but ended up in the hospital for 5 months with a perforated bowel (I think from the folfirinox and so much diarrhea).  Had a colostomy which removed 15 inches of large bowel.  Had high dose radiation in November 2012 to the tumour on the liver.  The radiation did seem to kill the tumour.  No other treatment on the peritoneum tumours.  Having another CT scan inFebruary to see what is happening and where to go from here.  I was turned down for the peritoneum stripping and HIPEC surgery.

Happy New Year, all.  I know 2013 will be better for all of us!


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