Defeat

20130918-123705.jpgAt some point you realize that there is no point fighting the inevitable, and that the only sensible option is just to give up. I reached that point last month.

If you have been following my blog, you know of my struggle to save my infected chemo port. Twice I thought I had the battle won, but always the infection returned. I had several severe septic reactions while accessing my port leading up to TACE #4, and that is when I had made the decision to finally give up the struggle and have the port taken out.

The mess with the last Chemoembolization just made this all the more urgent and the port was removed at the Freudenstadt hospital. I really missed the port. My veins were not in the best shape and it usually took multiple attempts to hit one with a cannula. Soon I learned which nurses were the most skilled at this and I started to seek these out. Ok, its only needles, but I have this psychological phobia where these are concerned. Though I must admit, I managed to sit through 3 failed attempts which 3 months ago would not have been possible without fainting or throwing up. Progress at last?

Without a port some of the IV’s like ALA or Vit C are quite harsh on the veins and it was actually quite painful as these went in.

I got a new port a week later and once it healed I was back in business. After three weeks of cannulas it was quite a relief. Now just to make sure I don’t get another infection. I have become quite anal about following strict aseptic procedures while accessing my new port and use extra antiseptics. I think the nurses will not like me very much, as no one likes to be told how to do their job, but tough. I am not going through this again if I can help it.

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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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15 Responses to Defeat

  1. paula says:

    I was shocked when I read this headline! But you are back, great! What about the markers, are they going down?

  2. Rona0909 says:

    Phew! Can you please not be so dramatic with the headlines in the future? I’m so glad you’re still going strong. Sorry about the port, I know you fought so hard to save it. But at least now your body doesn’t have to fight a port infection. You are so brave about the needles … 3 attempts!

  3. amby says:

    lose the fights but win the battle Rene…dont worry abt ports so much !!

  4. tanstaafl says:

    The IV vitamin C should not be too harsh if they have a good protocol with the right ingredients. My wife is right at 500 IV Cs, mostly 60-80 grams each, and she runs ‘em fast, like 1.4 grams C/minute (vs say 1 gram C/min recommended). Faster is harder on the veins. I think the 26 gauge needles have worke better than 24 gauge.

    Several things that I am most aware of in mixing are:
    Pure sodium ascorbate, pH ca 7.4, is less harsh than sodium carbonate/hydroxide buffered ascorbic acid to ca ph 6.8-7 in sterile (pure) water (not D5, Ringers or saline!). Commercial solutions are likely to have the lower pH for longer shelf life. Also preservatives may increase the harshness. We use pure sodium ascorbate, USP, dissolved at 500 mg C/mL.

    Too concentrated a solution may increase harshness. I find she’s happiest around 12.5 mL of aqueous injectant per gram of C contained, vs higher concentrations.

    A biggie for vein comfort is sterile magnesium chloride or magnesium sulfate solution added to the final vitamin C injectant. I am not sure where the upper magnesium limit is here, if one goes to very high daily vitamin C doses. Otherwise higher magnesium contents have been evolving among the alt MD for IV C for added comfort.

    Make ‘em do it right.

    • Rona0909 says:

      Dear Tanstaafl,

      I am interested in what you said about the IV C. I used to have IV C and my veins were affected by the high doses – non-existent veins where there used to be loads. I think it was because the veins weren’t flushed after the infusion.

      So when you talked about sterile magnesium chloride or magnesium sulfate solution added to the final vitamin C – is that the last bit of the infusion?

      Also, you write so knowledgeably – are you a doctor?

      Best wishes, Rona

      • tanstaafl says:

        We don’t flush, so to speak. The magnesium solution is added to the whole IV content precisely for vein comfort and preservation. Remember, adequate dilution is important too.

        Not a doc. More of a science jock.

  5. Steve says:

    I’ve had over 100 IV-C treatments, starting at 75 grams, now 100 grams.

    I infuse at 0.5 gm/minute, although I have pushed to 1.4 grams per minute in some infusions. At the higher rates I get quite thirsty and sometimes a bit drowsy.

    Magnesium chloride 2 grams MG total per 100 gram bag is added to relax the veins and increase comfort.

    Some doctors add up to 2 grams Calcium gluconate lest the ascorbate leach calcium from the bones.

    I’ve had the 100 grams dissolved in 500 mL water, 500 ml Ringers, and 1000 ml water, all worked fine.

    We use sodium ascorbate which doesn’t need any additional buffering.

    • Steve says:

      PS
      My veins are fine, no pain, no long-term issues. I have no phobia of needles and often can’t really perceived the stick when the 26 ga cath/needle is inserted, despite watching the site intently.

      The only time I’ve had pain is when infiltration occurred, and ascorbate solution begins accumulating in blister beneath the skin. That stings quite a bit. It almost always happens within the first minute or so after starting the drip.

      The reason to limit to 0.5 gram/minute is to get the highest area under the curve (AUC) for generating H2O2 and killing cancer cells. Faster rates give higher peaks but are cleared that much faster. We used blood samples from the opposite arm to measure serum ascorbate levels, 400 +/-50 is the target. My results with 75 grams were slightly below 350, so we increased to 400.

      Note the serum ascorbate samples must be promptly processed, frozen, and tested via the dilution method to give reliable results. It took a few tries to get the lab to handle the samples properly.

  6. Rona0909 says:

    Dear Steve, I am very impressed – thanks for sharing your knowledge. Unfortunately the doctor who administered the IV C did not have any of this knowledge even though he had been to the Riordan Institute in the US, and my veins are pretty much non-existent now. Also, he never tested for blood serum levels, saying that it was too complex. May I quote your advice in my blog? Best wishes, Rona

    • Steve says:

      Rona,

      You are quite welcome, and feel free to quote me on your blog. Please note that I am not a doctor, but I am in charge of my own body and make all decisions regarding my medical care. I fire doctors who don’t understand who has the authority in the relationship.

      What is the URL of your blog?

      The key to the serum level test is prompt processing of the specimen and talking to the lab director on the telephone before sending in the specimen. You want “Vitamin C with dilution” or you’ll just get an off-scale high result if they don’t dilute the sample. If you don’t have the lab director anticipating the unusual test, the lab techs will almost certainly run the standard test, no matter what it says on the package. Voice of experience speaking.

      I am about to be treated at a well-known clinic. The doctors there use high-dose IV-C regularly, but they believe that doses in excess of 50 grams risk damaging healthy cells. I am trying to find the basis for this belief, so far with no success. My understanding is that healthy cells have sufficient levels of catalase to protect against the H2O2, but I could see that large enough doses might overwhelm the defenses, particularly in a patient with less than optimal health.

      Best of luck to you.

  7. Peter says:

    Hi Ren,
    I am following your blog since I tried to find more information about the Dr. Jurkovic’s protocol. Thank you for sharing your treatments. I always check if there is new post in your blogs.
    Your blog inspired me to create forum page for cancer alternative cures. If you or someone here would like to share experience with some treatment please visit http://www.alternativecurescancer.com/

    All the best, Peter

  8. Rona0909 says:

    Hi Steve, here is the link to my blog:

    http://bisforbananascisforcancer.wordpress.com/

    Rather than monopolise Ren’s blog with my comments, perhaps I could e-mail you directly? Or vice versa? I’d like to find out more about your IV C treatment.

    I’m curious to find out why IV C didn’t work for me. I went up to 100g in the final few infusions. There were a few side-effects, but resolved after a few months. I think the UK lacks the facilities to test for serum levels of Vitamin C – none of the clinics in the UK do this.

    Many thanks again, Rona

    • Ren says:

      In regards to VIT C, the last wisdom I received was from DR. Siebenhuner. I always did high dose Vit C long term every 2nd day Mon-Fri. He suggested to do high dose Vit C once or twice a month, but daily for 5 days with no breaks.

      This made a lot of sense so I am now following this protocol. I am also splitting up the 75g I take now into 3 infusions that I spread out over 8 hours or so.

      • Rona0909 says:

        I did IV C for 3 weeks, daily (except Sundays), from 50g to 75g. And then 3 months, twice weekly, from 75g and ending on 100g. There was no decrease in the size of the tumour, but who knows what other benefits it might have had. The doctor wasn’t into testing for serum levels, and didn’t use any other substances, as this is the UK (and substances such as B17 are illegal).

  9. tanstaafl says:

    IV vitamin C should not be looked at as a stand alone cancer treatment. It’s effects are often supportive or ancillary, but still critical, like reducing inflammation, infections and histamine (VEGF trigger).

    What determines my wife’s maximum dose, and her actual infusion rate is … my wife. I can only advise her. Whatever/however she finally wants it, she gets it if at all feasible. This is a marathon, and while various technical considerations are crucial, endurance, month after month, is a key. Various psychological and physiological factors both have to work.

    As for our data and experience, vitamin C alone could not adequately inhibit her met cells, 5FU-LV could not, nor could vitamin K2 or K3 alone. But in combinations, they do in vitro. Our limited in situ data are reasonably consistent with the in vitro data. We also use additional natural substances that are adjuvant modulators.

    I was aware of the AUC data from Riordan (formerly Bright Spot) from the start which is analyzed on a particular pharmacokinetic model. One area that I have been watching concerns the Avastin -VEGF – tumor interaction papers. These cause me to worry about ultimate penetration of C or DHA in models with 1-2 extra compartments. So her high rate doesn’t totally disturb me. I advocate to maximize her comfortable /convenient dose, optimize frequency, and add additional modulators. Ultimately I would say we roughly fit into 3 rate choices – low, medium and high infusion rates – say 0.5 gram/min, 1 gram/min and 1.4 gram/min, each with unknowns, pluses and minuses.

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