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tsvieps's Recent CancerCompass Activity

  • tsvieps has replied to a post on the message board

    I corresponded via email with Tricia Spence some years ago after learning about her on Dr. Ralph Moss's Blog. He runs the Cancer Decision website, a for profit business that does not give medical advice, but does help people figure where to go for treatments. Such advice is based on their condition and orientation. He helped lead me to an Integrative Medicine expert in cancer, who is also highly respected by my Compa...

    September 30, 2018 view post
    • tsvieps has replied to a post on the message board

      There seem to be 2 questions here or maybe 3. CYP-3 is a path in the liver that is used to metabolize Ibrutinib and other drugs. Some drugs inhibit this path, including some drugs for CLL such as Venetoclax and Idelalisib. Grapefruit is one of the foods that also inhibit the CYP-3 path. This is why the instructions for Ibrutinib and Venetoclax say to avoid grapefruit. I intentionally violate this warning, so that ...

      September 13, 2017 view post
      • tsvieps has replied to a post on the message board

        My previous protocol of offlabel drugs (Rapamune, Metformin, Celebrex, Low Dose Naxtrexone) plus an extensive herbal protocol kept me alive for about 6 years longer than the median life of similar patients taking the standard protocol (FCR). However this non-standard protocol did not stop the progression of CLL; it just slowed it down quite significantly. Since I added Ibrutinib @ about 1/10 of its recommended dos...

        July 31, 2016 view post
        • tsvieps has replied to a post on the message board

          I have been taking Ibrutinib for 2 years. I have not noticed any side effects other than some fevers and diarhea in the first few weeks of use. This was because I was then processing a lot of dead CLL cells. In truth, I am getting full efficacy with Ibrutinib @ 1/6 its recommended dose. I mange to do so because I also have a protocol of herbal medicine and other prescription drugs that are now off-label for CLL. This...

          July 24, 2016 view post
          • tsvieps has replied to a post on the message board

            If your WBC has gone down 90k in 3 weeks, I would say you have the right dose. My experience is that losing up to 25k a day is fairly well tolerated. Symptoms are a little fever, fatique and diarrhea. The decrease will slow now by about 1/2 simply because there are less CLL cells to be found. But usually one's WBC goes up fairly dramatically before going down. This is because the CLL in the lympth nodes are chased ou...

            January 04, 2016 view post
            • tsvieps has replied to a post on the message board

              I take about 7mg each of THC and CBD orally. I buy "Meadow Blend" from dispensaries here in Portland. It is dissolved in nut oil. The dose is according to the company that makes it; they say they test the cannibinoid content. I only use it at night to sleep. I get no highs from this, but do feel that my balance is off some when I get up during the night to visit the bathroom. I have been on Imbruvica for almost 2 ye...

              December 04, 2015 view post
              • tsvieps has commented on a news story

                I have been using medical MJ for pain for about 1 year. I had had no previous experience with MJ use. I helps me sleep at night. But I do not feel alert enough to drive for about 6 six hours after taking it. I use a mixure in nut oil that contains equal THC and CBD, about 8 mg of each. Because it is oral, it seems to take about 2 hours to relieve my pain. Vapor or smoking is supposed to take effect quickly, but I &nb...

                October 08, 2015 view news story
                • tsvieps has replied to a post on the message board

                  Hi D. Martin, Your question could be directed at me or some of the other commentators. But I will respond. I am pleased to hear about your husband. I had been concerned about the planned bone marrow transplant. He is lucky he was turned down I think; it is an extremely harsh and damaging treatment, even though it is still the only method that is considered a possible cure. Ibrutinib is so much safer and effective wi...

                  October 01, 2015 view post
                  • tsvieps has replied to a post on the message board

                    The study was actually stopped because the manufacturer of the tea extract dropped. A co-sponsor of the study was CLL-Topics members. I suggested to the owner of this blog that we might get Life Exention, which makes a similar product, to help co-sponsor the next phase. She refused because they write articles and sell products that seem to satisfy suggestions in the articles. This severely tainted them in her eyes.

                    November 19, 2014 view post
                    • tsvieps has replied to a post on the message board

                      I have had a five month sidetrack with shingles in the face, complicated by acquiring the MRSA bacterial infection in the hospital, followed by another serious infection. A lot more pain and misery than I ever had with CLL alone. That said, Ibrutinib worked very well on me. My WBC went from over 330k to 30k in just over five months. RBC went to almost normal from severly anemic. Somehow, within a couple days with sh...

                      November 19, 2014 view post
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                      About tsvieps

                      Patient
                      Leukemia - (CLL)
                      Acupuncture, Alternative Treatments, Biotherapy, Cancer Nutrition, Cancer Prevention, Cancer Treatments, Clinical Trials and Research, Local Hyperthermia, Massage Therapy, Naturopathic Medicine, Photodynamic Therapy, Supplements

                      Retired R&D Scientist,outside med field. CLL for about 10 years, found 8 years ago at Stage 2 to 3. Am bit of a Lab rat, but have not been in any official trials.

                      I am trying to combine the best of Orthodox Western and what CAM (Naturopathy, Traditional Chinese, Herbal) that has good science and experience behind it has to offer.

                      Overall, I believe I am doing better than most of those with similar risk factors and starting stage have done with straight up standard treatment (for me this would have been FCR) have experienced. My Oncologist seems to agree with this, but with not being in a controlled trial, no one could prove this with significant statistical confidence.

                      Have support team of open minded Onc Doc, Naturopath and high level Herbalist who specializes in Cancer.

                      Have had no Chemo, but did have a very short treatment with Campath. Feel well, no serious infections in spite of parts of immune system being compromised...likely because of Herbal immune support.

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