DCA Miracle

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joyoflifegirl
joyoflifegirl Member Posts: 7
edited March 2015 in Alternative Medicine

I want to share my experience with DCA as it may have saved my life, and it may save others. I have been on DCA since July, 2014. I was diagnosed with TNBC (full
mastectomy + 5 sentinel nodes Nov 2013) with two nodes positive, ACT
dose-dense + radiation. I had my Circulating Tumor Cells (CTC) tested using
Maintrac prior to chemo, and had a total count of 500,000. After Chemo
the count had spiked to 3,250,000. I waited a month and tested again, the count
had skyrocketed to 6,000,000. Apparently this is a common effect of
chemo, and if this happens the risk of death is very high. 

Working with
Dr. Kahn at Medicor in Toronto, I went on an oral regime of DCA with
supplements to prevent side effects. A few weeks later I tested again
and the count was 1,000,000. I was ecstatic and so relieved. I tested
again a couple of moths later and the count was 250,000. I don't notice
any side effects other than a bit of fatigue and some absent-mindedness.
Dr. Kahn carefully monitors blood tests and any signs of neuropathy. It
is expensive, but I consider it a miracle. I am going to stay on it and
hope the count gets to zero. I highly recommend these blood tests for
anyone, and at least trying DCA with careful monitoring to make sure it
is working. Get it from a reputable provider who knows how to prescribe
and prevent side effects. I can post the Maintrac results or links if anyone is
interested.

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  • Momine
    Momine Member Posts: 7,859
    edited October 2014

    Joyoflife, I am glad your treatment is working. I am not asking you to post the actual Maintrac results, but I wonder if you could tell me if the reported number of CTCs is the estimated number in your whole body or if it is the CTCs in a specific quantity of blood.

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  • wrenn
    wrenn Member Posts: 2,707
    edited October 2014

    Interesting. Were you scanned after you had surgery, chemo and radiation? 

    I have read about this and worry about the side effects on the nerves.  I hope the person providing you with this treatment is careful about dosage since you could very well be cured from the 3 traditional treatments you had and it would be worrisome to end up with side effects from the DCA. 

    I think it is really important to have a positive attitude about any treatment since I believe our bodies react to attitude (placebo) so I am relieved to read that you believe in DCA.  Hoping fort continued health for you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    I agree with the other 2 ladies above.  When my CTC's were measured I had less than a per ml. of blood.  This was when I had progression and active mets.  How many mls. of blood where they testing?  That sound like a whole lot of CTC's!!  Did the company come up with the type of mutations you are getting?  Might you be mistaking CTC's with just regular tumor markers?

    I also want to know how much DCA yo are taking.  I am curious becasue I want to try it as well.  Do you put it in pill containers?

    Thanks.

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  • Momine
    Momine Member Posts: 7,859
    edited October 2014

    Adnerb, I looked it up. 

    As far as I can understand, they measure epithelial cells, which are not strictly speaking the same as CTCs. They call them CETCs.

    Also, they measure in 10ml of blood, but then they multiply it up to 5 liters, the normal amount in the body. That is how they come up with those huge numbers. I saw at least one study, which did find this test to have prognostic value.

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  • joyoflifegirl
    joyoflifegirl Member Posts: 7
    edited October 2014

    Here is the link to the Maintrac site.

    http://www.maintrac.de/diagnostics/home.php?lang=E...

    They have several different tests that they can do, including stem cells and drug sensitivity to determine the efficacy of different kinds of treatment. The measurement is a total - they count the number of cells per ml and then multiply it. I chose this over Cellsearch, which is the other common test, because I read research on PubMed that compared blood tested by Maintrac and Cellsearch from the same person, and came up with much lower counts using Cellsearch. For this reason it can be difficult to use Cellsearch to test for response to therapy. I think any test that shows you what is going on inside your body and how you are responding to different therapies is a good thing, and I am sure over time they will develop better and better ones.

    This is different from tumour marker tests because it simply tests the number of circulating cells, so you don't have to have an active tumour. 

    I was scanned after chemo but it was not a full PET scan - they rarely do those here in Canada. They did a CT scan instead and everything was OK. The Maintrac site is interesting because of some of the prognostic studies they have done. Some are in German but most are English.

    Here is a link on their site to a study from a German university which used the Maintrac test to monitor patients over time for relapse. When cell numbers spiked, there was a greatly increased level of relapse.

    http://laborpachmann.de/pdf/Publikation%20139.PDF

    The dosage of DCA that I take is 500 mg 3x per day, two weeks on and one week off. I take B1, N-acetyl L Carnitine and R alpha lipoic acid 3x per day as well. Dr. Kahn's patients rarely experience neuropathy, but if they do he takes them off the drug for awhile. It is apparently a very high quality form that he has made by a compounding pharmacy here in Toronto. I know there are cheaper places to get it, but I have read of many people having problems. I think there are quite a few reputable doctors in both countries that can prescribe DCA safely. It apparently does not work for everyone - the figures I have heard are around 60%. Unfortunately it is not being widely tested, though there are some clinical trials being done here in Canada on a limited basis.

    I wanted to share the information in case it can help someone. I have kept my journey with this illness fairly private, but in this case it seemed like my experience might be really helpful to others.

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  • Momine
    Momine Member Posts: 7,859
    edited October 2014

    Joyoflife, thanks for the info. 

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  • daliol
    daliol Member Posts: 6
    edited March 2015

    Hello,

    really glad to see this communication about cancer cell diagnostics.

    We did 3x Maintrac tests in 3/4 year. The results was: 1) 1 million cancer cells in 5L of blood, 2) 2 mlns cancer cells in 5L of blood, 3) 1 mlns cancer cells in 5L of blood.

    If i use simply logic, third result was good, i mean all we have did since second test led to decrease cancer cells. But still, doctors did not explain deeply what such results mean.

    So, i just tryung to ask someone there, if you have an experiances with Maintrac and how to understand these results. Still i think that 1 mln is a lot :( I did not found anything interesting that help me to understand the situation with cancer all over the internet since first test.


    Thank you

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