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RGCC TEST

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AMY5
AMY5 Member Posts: 5
edited July 2020 in Alternative Medicine

Hello

I'M thinking to do this test but not sure, it's very expensive and my oncologist informed me today when "If anyone claims that they see cancer stem cells circulating in the body, they are lying". In the series The truth about cancer, there are lots of informations and suggestions, which I like, but does this test really work on high stage cancers. If anyone know anything about this test or any other test as ORGANIC ACID TEST, or?...please let me know. I just can't sit and wait. I had side effects so could not finish my treatments. I have to look for alternative way. Thanks.

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  • Italychick
    Italychick Member Posts: 527
    edited November 2015
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    I did the RGCC test, $3,000! It found some circulating tumor cells, but at a very low threshold, under the level supposedly defined for invasive cancer. I don't see anywhere on my report where it mentions stem cells which I thought it was supposed to include. It identified chemo agents that would work on me, but I am a little skeptical about it because it rated Taxotere and Adriamycin as the highest effectiveness (84%). When I asked my MO about it, she said of course it will say that, those are the "big guns." It identified a bunch of alternative things like artemisinin, genistein, resveratrol and polymva and how effective different alternative substances would be on what was in my blood.

    But the weird part is my tumor was er and pr negative, and the report said my blood had 30% estrogen and 15% progesterone receptors, and tamoxifen would be 30% effective. So that led me to more confusion. Is what is circulating in my blood something my body seems to be dealing with since my tumor was negative for receptors? And so would I now treat based on my actual growth, which was negative, or what is circulating in my blood, which shows positive receptors? Since I am still doing Herceptin, I haven't proceeded with anything alternative yet. I am in a confused state.

    The integrative doctor said he would treat me with substances that seem to indicate a high sensitivity, like genistein, and go from there. When I asked how we would know the substances were effective, I didn't get a definitive answer. I haven't pushed it farther yet because every visit there was hundreds of dollars which only applied to my $25,000 out of network deductible, and I was already putting out $10,000 in deductibles for my chemo and Herceptin treatment.

    So I guess what I am saying is what is circulating in the blood may not match what was in your tumor, and the report says that. It says "this test will not detect cancers of the brain or other cancers that have been encapsulated by the body, not releasing circulating tumor or stem cells into the blood stream if any of these cells are dormant. We still recommend the use of biopsy, blood markers and/or various scans with this test when cancer is suspected or known to exist. No test is 100% accurate."

    So I guess I'm on the fence as to its value. Most alternative approaches will treat with insulin potentiated vitamin c IV and add substances like artemisinin into the cocktail whether they have this report or not. I did find somewhere that artemisinin was mainly effective with positive receptors and doesn't work for negative receptors. Polymva also seems to be used a lot, along with genistein and resveratrol.

    A curious thing is we have a dog with skin hemangiosarcomas. Sometimes they resolve on their own and we asked the vet why. He said somehow at that point his immune system was stimulated enough to take the cancer out, but he doesn't know why or how. So based on that, my thought is boost the immune system as much as possible and get the body to fight.

    Hopefully I helped. If I can answer any other questions, happy to!

  • marijen
    marijen Member Posts: 2,181
    edited November 2015
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    Amys - try to go here. I gave this article to my BS after he said CTC tests weren't accurate and changed his mind, will give me the test next week. Not sure if it's the same but. You have to research the articles at ncbi.

    Serial monitoring of circulating tumor DNA in patients with primary breast cancer for detection of occult metastatic disease

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC455134...
  • AMY5
    AMY5 Member Posts: 5
    edited November 2015
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    Hi Italychick thank you very much for reply and all the details you are giving me. Yes, this test sound to good to be complete truth, it seems. I have to pay all alternative treatments out of my packet and it's $5000 Canadian , so maybe it's not worth it after all. Plus I'm stage 3 I don't know how that will work, I was just hoping that they can tell me what exactly will work for me, since naturopaths just guessing as everyone else. Maybe there are some chipper tests, like hair analysis , since I have bad reactions from conventional treatments and alternatives as well. Thank you very much.
  • AMY5
    AMY5 Member Posts: 5
    edited November 2015
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    Hi Marijen, I'm not sure if RGCC test it's the same one that you're going to do, but please let me know what do you think about that one once you got the results. Thank you.


  • Italychick
    Italychick Member Posts: 527
    edited November 2015
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    solfeo mine also showed high risk for metastasis, and the doctor said everybody's tests show that, so I wouldn't stress about that part. Some of the alternative stuff that showed up (Okinawa factors) the doctor said he doesn't even know about.

    So here I sit, waiting for Herceptin to end in February, wondering what to do. Did you take any action based on your recommended alternative treatments? I'm still in a quandry about what to do. Did the hormone receptors in your blood match what the tumor statistics were? Mine didn't, which confused me even further

  • chisandy
    chisandy Member Posts: 11,319
    edited November 2015
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    Regardless of the utility of the RGCC and any CTC testing, I would skip the hair analysis--it’s worthless, even though noninvasive. Check quackwatch.com.

  • Lily55
    Lily55 Member Posts: 1,748
    edited November 2015
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    Yes I would avoid hair analysis too......

    I had RGCC test done in Greece (sent by courier) and it was only 600 euros so don´t know why its so expensive from USA?  THE consult was ariund 450 euros so for 1000 euros it was done.......

    It can detect cells that have been shown to lead to mets in certain áreas of the body.  I understand it is the kind of circulating tumour cells and whether they are stem cells that it can really measure but I am no expert.....Dr Nicola Hembry in the UK uses these and understands them, don´t know if there is a facility offered for online or telephone consults with her but might be worth emailing to ask?

  • marijen
    marijen Member Posts: 2,181
    edited November 2015
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    Thanks for all the input. Yes the cost of CTC is about $1000 without insurance. But inurance only pays less than $400 from what I found so far. I have a good artcle or two somewhere, I'll see if I can find them. Bb

  • AMY5
    AMY5 Member Posts: 5
    edited November 2015
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    Hi, thank you all for replay, tomorrow I'm going to see naturopath and talk about this test, $4.750 no insurance in Canada or very small amount, It's lots of money, so is it wort it? This is from naturopath's office: (did you have the same)

    Oncotrace: gives a circulating tumour cell count as well as cancer stem cell markers, currently $1,375 CDN

    Onconomics: tests isolated malignant cells in culture for inhibition with standard chemotherapy drugs, currently $3,250 CDN

    Onconomics Extracts: test isolated malignant cells in culture for cytotoxicity, anti-cancer immune system response, and inhibition of growth factors to natural agents, currently $2,800 CDN

    Onconomics Plus: includes Oncotrace, Onconomics, and Onconomics Extracts, currently $4,750 CDN

    To begin, please call our office to book an initial consultation ($166.50) and no preparation is required for the blood draw.


  • Italychick
    Italychick Member Posts: 527
    edited November 2015
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    I don't feel I know enough to advise either way, but here are my questions and comments after having the test done.

    How confident is the naturopath that the results can be interpreted?

    What if the circulating tumor cells are different than the biology of your tumor? How does that affect treatment? My circulating tumor cells did not match the pathology of my actual tumor, they were different. Tumor had no er or pr receptors, but circulating tumor cells showed 30% estrogen, 15% progesterone. Nothing was mentioned about HER receptors.

    I got no cancer stem cell report. So verify that part. I was particularly interested in that since the stem cells are the most problematic. I only got a CTC count. Cancer stem cells were not mentioned at all, so I don't know if that means none were found, or the information wasn't included.

    Another thing to keep in mind is that the body biology can change, so the test you get done will be valuable in the short term, meaning if you plan to do alternative treatments immediately.

    How is success measured? I suspect it will require paying for the test a second time, so it won't just be the up front cost, it will probably be twice that, or at least a second test to measure whether circulating tumor cell count has dropped. What I saw online said they want to re-measure your tumor cells every 3-4 months. So I think that would be the oncotrace cost

    I have delayed dealing with the report in depth with my integrative physician because I won't embark on any alternative treatments until Herceptin is finished in February.

    Sorry - there are no easy answers.

  • chisandy
    chisandy Member Posts: 11,319
    edited November 2015
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    I checked the Quackwatch and ScienceBasedMedicine sites; the former is silent about CTC testing, but the latter is skeptical about their utility, as well as about “liquid biopsies” for the reasons Italychick cites. There is no definitive way to interpret the results and not yet any statistical correlation between results and their impact on course of disease or treatment, nor even between cells in blood and cells harvested from the tumor (much less double-blind studies). OTOH, it recognizes the validity and utility of OncotypeDX--perhaps in the near future there will be an analogous genomic assay for estrogen-negative or HER2-positive tumors that can predict their susceptibility to specific cytotoxic and targeted biological therapies beyond what we currently know. But blood and tumor samples are probably as alike as apples and chainsaws.

  • AMY5
    AMY5 Member Posts: 5
    edited August 2018
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    Thank you Italychick I will be ready for my app.tomorow, Thank you allSmile

  • Italychick
    Italychick Member Posts: 527
    edited November 2015
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    Solfeo, also, did you pay for the SOT therapy? That is probably my next step, and I'm just wondering if you decided to do that portion also. It seems to be potentially one of the most important outcomes of the RGCC test, as far as I can tell, since it creates a "stealth serum" that sneakily attacks the cancer cells, or at least that is my understanding of it.

    So February for me will probably be paying for the SOT development, and then pondering the myriad of natural substances that may be effective and working with the doctor on deciding which ones to use. And trying to figure out why the report says Tamoxifen would be 30% effective for me with a cancer with no ER or PR receptors.

    On a good day, I tell myself that my CTC count was super low, under the threshold established for cancer, and that since the receptors don't match my tumor, the tumor cells hadn't escaped and whatever is in my blood my body seems to be dealing with. On a bad day, I tell myself there is a second cancer brewing out there that the RGCC identified very early.

    I've started going through all the potential agents I can use that are listed in my report to figure out what they all are, which isn't easy.

  • Lily55
    Lily55 Member Posts: 1,748
    edited November 2015
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    I am no expert but from our message Exchange I think the Oncotrace test is the only one worth doing, as you are not doing chemo so testing for sensitivity to chemo regimes will not help you

    Good luck tomo xx

  • Sharaezed
    Sharaezed Member Posts: 1
    edited July 2018
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    I had breast cancer two years ago - invasive ductal carcinoma, Stage 1A, 1.5cm, triple positive, no lymph node involvement. I have been seeing a physician that is monitoring my circulating tumor cells and I am considering SOT. Does anyone know of a physician in Chicago or Minnesota that is offering this treatment. I know that Dr. Conneally, Cancer Center for Healing is offering it but I would prefer someone closer to Minnesota. Thank you for your recommenda

  • Nonabstruse
    Nonabstruse Member Posts: 1
    edited September 2018
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    For those of you interested in the RGCC testing, I'd like to offer my opinions regarding their validity and usefulness.

    Before attending medical school I was a academic research scientist in areas of developmental biology, hematology, immunology, and tumor biology. I gained a lot of knowledge and practical experience in the technical perspectives of what these test involve in several very high tech laboratories, and have co-authored several peer-reviewed publications on these topics.

    I have been practicing medicine for 27yr and have specialized in integrative medicine for the past 15 years. I have treated many cancer patients, but I do not recommend or order RGCC testing for patients. I have reviewed the results of dozens of RGCC tests that patients bring to their consultations with me since about 2005.

    What I'm going to talk about will probably disappoint and/or anger some folks.

    I believe that the specimens are just disposed of (hopefully appropriately as biological waste) and a pre-written report is sent to the patient and doctor that ordered it. There are distinct similarities amongst individual reports, glaring errors, and impossible technical procedures that are disturbing indicators of fraud.

    How could I be so slanderous ?! Because I can defend my statements with experience and knowledge in the field of cell biology and molecular biology.

    Let's start with an easy one. How the blood specimen is obtained that will be couriered to Florina, Greece a bucolic Macedonian municipality.

    All the reports I've looked at from 2005-2018 state: "The sample that was sent to us for analysis was a sample of __ml of blood that contained EDTA-Ca as an anti-coagulant, and packed with an ice pack." (my emphasis).

    Any of the studies that are allegedly done on this sample would certainly require that the blood be anti-coagulated, otherwise the sample would be a gelatinous maroon blob. Hardly starting material for separating the tiny fraction of circulating tumor cells (CTC) from the sample.

    The anti-coagulants commonly used in syringes or vacuum collection tubes to collect blood include:

    1) Heparin- a natural anticoagulant, primarily prepared from the intestinal lining of hogs. (green top tube)

    2) Monovalent salts of Ethylene Diamino Tetraacetic Acid (EDTA) - synthetic compounds that will bind the calcium in the blood and thereby prevent it from playing its critical role in the formation of the clot. These are almost exclusively potassium (K2EDTA - lavender top), or sodium (Na2EDTA - royal blue or tan top).

    3) Citric acid/Citrate- Yes that's vitamin C. It will also bind the calcium in the blood sample and prevent clotting. (light blue or yellow top). Citrates are also used in blood donation bags, dialysis machines, and equipment that concentrates white blood cells and bone marrow stem cells from a patients blood and returns the plasma and red blood cells to the patient (leucopheresis)

    1st FACT - CALCIUM EDTA (EDTA-Ca) WILL NOT ANTI-COAGULATE BLOOD !!!

    So why is that important? It's probably just a simple error, a typo. Just overlooked for a decade??! And nobody (including me) called them on it?! If a laboratory is so sophisticated that it can perform so many highly technical procedures, but can't even properly document the simple technique used for obtaining anti-coagulated blood, what else is erroneous, or worse, just fabricated?

    I realize that many people (including doctors using these tests) have put their faith in the hope of having a personalized treatment defined by these tests. I believe that scientifically and ethically challenging the principles and practices that are supposedly used to generate these results may be enlightening for all.

    My next post will be on technical aspects of maintaining cell integrity and viability ex vivo - Cells don't travel well, I'll explain why.

    Hope I don't get treated like Dr. Emma Shtivelman




  • Luhoo64
    Luhoo64 Member Posts: 1
    edited November 2018
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    This is very interesting. If this only the tip of the iceberg what were your other concerns?

  • Lillygal2018
    Lillygal2018 Member Posts: 1
    edited January 2019
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    Dr Nonabstruse, please continue what is wrong with the RGCC test. I was considering taking my mom to get the test, but need to know the whole story.

  • Deshay
    Deshay Member Posts: 1
    edited January 2019
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    hey I live in Long Beach California, how can I get the oncostat test done around me

  • SandraC
    SandraC Member Posts: 1
    edited February 2020
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    How are you? Have you done RGCC test?

  • jessie123
    jessie123 Member Posts: 134
    edited February 2020
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    I don't know anything about the RGCC test, but I know a little about the CTC test. I saw a doctor talk at one of the online BC symposiums that the CTC test is prognostic for early stage BC, but even if you have circulation tumor cells there is nothing that can be done about it. Then I heard it's sometimes used for the metastatic patients to monitor how their medication is doing. The place that developed the CTC test that I'm going to do is CellSearch. I think they contract with around 4 labs in the county. My hospital will do the blood draw and it has a small window of time to arrive at the lab. The CTC test will cost me $600.00. That's the hospital and lab charge. The test itself was developed by CellSearch. The only reason I'm doing this is for it's prognostic value.

  • georgealan
    georgealan Member Posts: 3
    edited February 2020
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    Can you please continue your above analysis?

  • georgealan
    georgealan Member Posts: 3
    edited February 2020
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    can you please attach again your results? Because the link is suspended.


    Thank you.

  • georgealan
    georgealan Member Posts: 3
    edited February 2020
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    @Solfeo can you please attach again your results? Because the link is suspended.

    Can someone else share their results in the natural substances in ER+, PR+ and HER2- type


    Thanks

  • Hope1982
    Hope1982 Member Posts: 1
    edited July 2020
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    Hello everyone,

    I was wondering to do RGCC test. It’s quite expensive in Canada, but I would like to hear any feedback about the benefits of this test. Does it make sense to do it? I would appreciate to hear any feedback or experience with this test. I am stage1, Er positive, Her positive.