Lifelines

20131004-133441.jpgLast month I was thrown two potential lifelines. Firstly I found a surgeon willing to do a colon resection using Dr. Karel Fortyn’s devitalization/devascularization method. I blogged about this procedure in the past where I went into a great deal of detail, but to summarise:

Devascularization involves firstly resecting the colon. The difference is that the veins feeding the tumour are ligated and both the tumour and the resected colon section are left inside. Starved of its blood supply, the tumour necrotizes. This stimulates an immune reaction capable of clearing distant metastasis. This reaction lasts several weeks.

I should add that the procedure has been banned in the Czech Republic, but is used to this day with great deal of success in veterinary since. The surgeon is taking a great personal risk, but believes in the procedure and continues to offer it to patients. I had a meeting with the surgeon and an operation was scheduled pending some tests.

The second potential lifeline came a few days later quite by chance. While I was in Germany, my wife came across a news story about a new revolutionary liver surgery that had just been performed, also in the Czech Republic. She sent my medical records to the hospital and a few days later she received a phone call that I could be a potential candidate for the surgery. When she told me, I realised straight away what it was. It was ALPPS (Associating Liver Partition and Portal vein ligation for Staged hepatectomy). I had my eye on this procedure for over 8 months and talked to several surgeons about it, but to be accepted into this trial was a big deal. Straight away I changed all my treatment plans in Germany to be able to meet the surgeon.

Although I do like the Devascularization surgery, its success is based on immune system response. This works best with low tumour load, so really the choice was simple, although ALPPS is a far more risky procedure. The plan is thus to try and reduce my tumour load in the liver, then follow it up by Devascularization in perhaps 6 months time.

The meeting with the surgeon went well, and the ALPPS surgery date was set for the 9th of October. The surgeon is able to operate because he found a 7% section of healthy liver tissue in the left lobe next to an artery. This is just enough to potentially work with, but I was told that this is a major surgery with 8% average mortality rate and that I am by far the worst case they ever operated on. I didn’t give it a second thought and signed up for the trial. In my case, it will be a 3 stage resection, where typically it is done in two. This means a total of 3 surgeries weeks apart. My chances of survival depend solely on how fast my liver will regenerate after the surgery. It can take as little as a week, but they had a case where it took 6 months. With the little liver I have left, a week means I live, a month or more and I don’t.

The operation is far from certain however. If any micro mets are found in the peritoneum when they open me up, they will not proceed. Also my health has deteriorated in the last 2 weeks and I developed ascites which may also put the surgery in question. I will find out on Tuesday.

At the moment I am just so furious. I consulted with two liver surgeons in Australia about this very procedure. Both said that they were familiar with it, and both told me that I was not a suitable candidate as I did not have enough healthy liver left. What they failed to tell me was that being familiar with the procedure meant that they knew about it, not that they actually performed it. So rather than to admit that they were not qualified to provide advice, they applied their knowledge of a standard resection I suspect. Damn their egos. Based on those opinions I stopped exploring the ALPPS option. That was my biggest mistake as I was in a much better shape for such surgery at that time. Now my liver is failing, I am turning yellow, have cachexia and ascites. But I still have hope that the surgery will proceed and that I will end up with a fully regenerated liver within 6 weeks. It just has to work.

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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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7 Responses to Lifelines

  1. amme_s says:

    Unfortunately there is no if exists option.
    You’re in my thoughts and prayers, Ren

  2. AnnJ says:

    Ren,

    You have been on my mind a great deal since reading your last post. It’s hard to imagine the “what if’s” you are dealing with right now, but please try to let go of the anger and focus on being at peace and enjoying your family before surgery. Deal with the pricks later :) . I pray that you are surrounded with peace, love and family as you face this next phase of your treatment. Stay strong.

  3. amby says:

    dear ren, i suspect your ascites is due to the liver issues . did you check your albumin / globulin ratio? i think ALPPS is a good option but they might want to let any infections pass before operating. My best wishes , do keep up updated..

  4. tanstaafl says:

    Not sure whether alien liver cells would be complementary to your postsurgical liver regeneration but some assistance that might be available on an experimental basis. One of the implant technologies didn’t even use immune suppression because of some kind of coating.

    On temporary liver replacement:
    A perfusion system for temporary replacement of liver and spleen …
    Liver implant gives boy ‘another chance of life’
    Liver Vascular Bed for Hepatocytes Cell
    Therapy

    Good hunting, Ren.

  5. Rona0909 says:

    Dearest Ren, it is never too late. You have come this far. You are still going strong. It’s a shame those Australian doctors didn’t know any better, or even the German doctors. This cancer journey is such a lottery it seems, and all the medical people are specialists in their own fields, and no one has all the answers. I hope you get plenty of rest before your surgery. I will be praying for a positive outcome. Please keep us posted as we are all rooting for you. Love, Rona

  6. brookeh says:

    Ren, keep up your fighting spirit; you’re stronger than anyone I’ve ever met, before. We’re always thinking of you and sending our strength, especially tomorrow. Speak very soon.

  7. pauldedek@gmail.com says:

    Hi Rene
    Thanks to keep us updated. It is incredible battle. As every strong person, as you are, going in to win. You got it. We are with you all the time. You have to WIN IT.
    CUS Alenka & Paul

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