ALPPS Non Event

On Wednesday I woke up in intensive care. I was sore, but I was alive was my first thought. My second thought, something is not right as I looked at clock and the time showed only 1pm. Also I did not feel sore enough for such major surgery.

Soon after my wife came in and told me that when they opened me up, they found 10 micromets, 1-2mm in size in the peritoneum and the ALPPS surgery did not proceed for that reason.I pretty much figured all of that out for myself, but was still devastated. I was warned about this possibility, but I did instruct the surgeon to proceed with surgery even if micromets were found. Again too much red tape and regulation it seems.

The positive outcomes were a drain to deal with the ascites fluid buildup, and they took 3 biopsy samples to send to dr. Nesselhut for future dendritic cell priming.

The next step I was offered was Removab injected peritonealy to try and deal with the ascites issue. I have been in a Czech Hospital for 5 days now, to recover and waiting to see if Removab can be ordered. (The food is terrible btw.) As it is not approved in this country this is proving to be more difficult than the local oncologist thought, so am considering a trip to Germany for this. I should know later today.

I have still not given up on ALPPS, just need to get creative.

The drain that was put in is making my life miserable too. It is seeping from the side which they fixed by putting in an ostonomy type bag over it. Not the most comfortable thing to do on a fresh wound. The drain line also keeps getting clogged all the time. Its draining about 2 litres each day, but they keep pumping IV electrolytes into me at the same rate so it seems self defeating at times. Bad news is that the fluid drained contains lots of protein as well and this is not as easy to replace.

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About Ren

I have been diagnosed with stage 4, metastatic colorectal cancer in October 2012, 3 days after my 44th birthday. There is no cure, but I am determined to go down the road less travelled to find one. I have setup this blog to document my journey and hopefully help others in the process. My view is that if there is a cure, it does not lie with traditional chemo, but with the immune system. Time will tell.
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5 Responses to ALPPS Non Event

  1. carl109 says:

    Hi Ren. Probably not high in your mind right now, but I wanted to wish you as happy a birthday as possible coming up under the circumstances. I’ve read all your posts and have passed on the mcrc4 web address to a few friends here who are following your progress.
    I still believe you can find a way to beat this, and each time I see a new post it gives me a little bit of hope that you’re a step closer.
    Love from Australia, Carl & family.

  2. Rona0909 says:

    Hi Ren, I’m so glad that you are alive and going strong. I was at a group healing session on Saturday evening and made sure that my intentions included you in the healing. I’m sorry about the setback – it just doesn’t seem fair. When I read your posts, I am strengthened by your courage and determination and ability to find humour and dignity in this roller-coaster journey. We are all with you always. Looking forward to all your future posts. With love, Rona

  3. Rona0909 says:

    PS – you should buy shares in Trion Pharma!

  4. paula says:

    Hi Ren,
    please google and try N.I.I.T. “Nicht-Invasive Induktionstherapie”. My husband being in an similar situation like you has for the first time a decrease of CA 19-9 after 3 times N.I.I.T. therapy. In addition he got dendritic cells and hyperthermie. So it is difficult to say which therapy is responsible for the decrease, perhaps everything in combination, but N.I.I.T. seems to be very effective.

  5. amby says:

    its been over 10 days …how are you doing ren ? out of the hospital and back in the fight i hope!

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