A forum for advanced pancreatic cancer issues

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Joined: Sun Jun 30, 2013 10:38 pm

New Gent

Postby washingtonmike » Mon Jul 01, 2013 1:32 pm

Good day All: I'm writing from the USA and was diagnosed with pancan the 22nd of May. We started the Falfurinol protocol that same day and I have now had three treatments. I'm in my free week between treatments and doing fairly well. I have one met located in my omentum (lower left abdomen) and am curious that I'm not finding other folks with tumors in this area. Is it fairly rare then?

On treatment day I have about 4 hours in the outpatient center for the first two or three infusions and then I take the 5FU over the next 46 hours via a portable pump and a PICC line. And, finally, after all that I have an injection of Neulasta and my WBC at the last testing was 9.4K/uL up from 4.2K/uL on a previous test.

It took five months to get my diagnosis what with all the different tests, scans, waiting for appointments, etc. so my time may be getting a little short. We have not yet done a rescan to see what, if any, effects the chemo is having.

I'm still experiencing considerable abdominal pain (controlled by hydrocodone with acetomenophin, sometimes with acetomenophin alone), the occasional nausea (controlled by Zofran), and constipation and diarrhea which seem to come and go without cause, though I'm quite sure the constipation is related to the use of the pain meds. I do take a stool softener twice a day.

I would be interested in hearing from other folks with this type of problem or anything related to it. Have a good day all. Cheers, Michael

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Joined: Sun Mar 24, 2013 8:15 am

Re: New Gent

Postby J_T » Mon Jul 01, 2013 2:20 pm

Hi Michael and welcome!

falfurinol? is that the same as Folfirinox? There are a few on here on that, not heard of your one. My husband was diagnosed in March this year and has just had cycle 5 and doing quite well. The infusion process sounds very similar though. We are there about 5 hours and go home with the 5FU pump. No pain thankfully. Ray, my husband also has no need for Neulasta as his bloods have always been good. His first scan is imminent!

Sorry to hear you're suffering pain an discomfort and I hope you can get the pain under control pretty quick!

The nurses (Jeni and Dianne) on this site are excellent and are available to telephone or email with any questions or queries.

Best wishes

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Joined: Wed Aug 01, 2012 7:14 am

Re: New Gent

Postby JOC » Tue Jul 02, 2013 9:17 pm

Hi Michael

Sorry to hear you are in pain, please talk to your doctors or nurse and the brilliant nurses here on this forum about pain relief as I now understand there are a lot of different combinations of medications, therapys etc to relieve pain and different things work for different people

Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: New Gent

Postby LindaH » Thu Jul 04, 2013 10:12 am

Hi Michael,

I don't really know anything about the met you speak of in your lower left abdomen, so unfortunately, I'm unable to help you with that, but as Julia points out, Jeni or Dianne will be able to give you the correct information.

Now with regard to your constipation and diarrhoea, well I found because of taking (what seemed like a bucket full of painkillers, Morphine) the constipation was horrendous, but as-soon-as I stopped needing painkillers I then suffered with...the dreaded diarrhoea.

Now this was because my pancreas - being blocked by the tumour - wasn't working as it should ie; I was unable to digest my food properly, so I needed to take enzymes called Creon which is derived from pigs pancreas's to enable me to digest my food. The problem is it can be a bit hit and miss how much Creon to take, but Jenni and Dianne helped me with dosage and hey presto I am now diarrhoea free....YAY! well....except if I have too much cream with my strawberries.....

This maybe something you could talk to your doctor about, it might just be something that can help you.

Good Luck Michael and welcome to the forum.