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  • #63693
    cohanja
    Participant

    If this can determine if anything escaped from the original tumour when it was excised, then they should be offering this – why not determine that if it can be determined?

    #63694
    PhillyRed
    Participant

    There is some preliminary evidence that circulating tumor cell assays may offer potential as a diagnostic, disease progression, and treatment response monitoring tool. It is also envisaged that eventually it may be used as a way to remove tumor cells from circulation (in a way analogous to dialysis). However, the scientific evidence and the technology remain investigational currently, and as far as I know, have not yet obtained FDA approval. Such technology will require that both the scientific rationale, the assay results, and the instrumentation will require validation and FDA review and approval before this can be used clinically. I don’t know if use of this device in Europe is still investigational or if it has been allowed for use in the clinical setting, but in general, Europe has less stringent regulation of medical devices than does the US, and devices can obtain a CE mark, rather than a regulatory agency approval.

    #63695
    Catherine Poole
    Keymaster

    I have not seen any such screening device that can detect circulating tumor cells. It would take some substantial research on many people to convince me. But in Cohanja’s situation, low risk stage 1, there would not be any cells to detect anyway. The disease is gone with the proper biopsy. Even the wide excision is not a necessary follow up, but old theory.

    #63696
    farang100
    Participant

    Catherine Poole wrote:

    I have not seen any such screening device that can detect circulating tumor cells. It would take some substantial research on many people to convince me. But in Cohanja’s situation, low risk stage 1, there would not be any cells to detect anyway. The disease is gone with the proper biopsy. Even the wide excision is not a necessary follow up, but old theory.

    Actually Catherine that is the advantage of the test insofar as it can predict early on even those people with insitu (very rarely) or stage 1 melanoma who may be at risk of metastisise .

    Research has revealed that even these early stage melanoma patients can have high levels of melanoma in the blood and therefore these people may benefit from more aggressive intervention than normally would be done for early stage melanoma patients.

    http://www.medscape.com/viewarticle/777002

    Also for later stage patients The advantage of the test really is that not all people respond to therapies the same way so using this test can monitor what therapies are working or not working and changing therapies where required. It goes even further than that in that can also identify what proteins might be involved.

    It is only available in Germany as far as I know although there is another similar test available in the US Cellsearch but its results aren’t quite as good. I believe you can order the test and can blood shipped over to Germany if you want.

    #63697
    farang100
    Participant

    PhillyRed wrote:

    There is some preliminary evidence that circulating tumor cell assays may offer potential as a diagnostic, disease progression, and treatment response monitoring tool. It is also envisaged that eventually it may be used as a way to remove tumor cells from circulation (in a way analogous to dialysis). However, the scientific evidence and the technology remain investigational currently, and as far as I know, have not yet obtained FDA approval. Such technology will require that both the scientific rationale, the assay results, and the instrumentation will require validation and FDA review and approval before this can be used clinically. I don’t know if use of this device in Europe is still investigational or if it has been allowed for use in the clinical setting, but in general, Europe has less stringent regulation of medical devices than does the US, and devices can obtain a CE mark, rather than a regulatory agency approval.

    Yes that is an accurate summary of the current situation with this test as far as I know. I don’t know how widespread its use in Germany is.

    From a personal perspective where I am in limbo land really it was a good test to do as I am very high risk for recurrence and spread to distant sites because of how large my tumor was and it being nodular as well.

    It revealed that at least my cancer has not spread anywhere yet and that there were apparently quite a lot of dead cancer cells in the blood stream according to my doctor.

    It is a benchmark to see if the therapies that I am using are working when next I test in three months time.

    If my numbers go down then we know we are on the right track if not more aggressive therapy might be indicated.

    Of course this test was done in conjunction with many other blood tests like S100 protein and LDH and all the immune function test along with full blood count.

    Finally I wouldn’t necessarily place all my faith in this test either but it is another tool that seems from preliminary research to be able to offer more information to patients and to be able to better target therapies to individual situations rather than a one size fits all approach to cancer treatment which looks at statistics and bases therapies on these statistics which is current best practice.

    #63698
    cohanja
    Participant

    There seems to be a contradiction, I wish I knew what is accurate.

    One says “Research has revealed that even these early stage melanoma patients can have high levels of melanoma in the blood”

    Another says “low risk stage 1, there would not be any cells to detect anyway. The disease is gone with the proper biopsy”

    Your mental state really changes depending on which you believe.

    #63699
    cohanja
    Participant

    I read the article, and I have to say it’s very concerning if I’m reading it right, or maybe I need an explanation of what this means. What I gathered was that 92% of patients expressed markers in their blood, circulating tumor cells were detectable at all stages of disease and long after surgical treatment, even when patients were considered disease free, so diagnosing patients as disease free after surgical removal of early-stage melanomas is inaccurate, as tumor cells dispersed into the bloodstream may remain dormant, prior to formation of distant metastases. They showed that circulating tumor cells are detectable at all stages of disease and persist long after treatment. What I don’t understand is if so many. . 92%. . express markers in blood. . . how is it that thin localized melanoma is usually curable by surgical resection and “only” 5% of patients with lesions < 1mm develop metastatic disease? You would think that number would be much higher if almost everyone has tumor cells circulating in their blood.

    #63700
    farang100
    Participant

    Yes that is a bit confusing and they weren’t using the Maintrac system for monitoring circulating tumour cells they were using another system.

    But certain markers indicated poorer prognosis according to that test even thou nearly all melanoma patients had some of the markers at various levels. So I think the markers were the important factor here.

    I will take a look at one of the research papers that tested the Maintrac system and post a link when I have sifted through the papers. But they also say that there is melanoma in the blood for all patients at all stages but they use a different measuring methodology.

    The link I posted previously to the Maintrac website has a whole bunch of PDFs with research papers on the Maintrac system.

    #63701
    cohanja
    Participant

    “there is melanoma in the blood for all patients at all stages”

    so it never really is gone, even after biopsy/surgery. . it’s always laying dormant somewhere and may or may not strike

    #63702
    TreeFrog
    Participant

    We are dealing here with such a mass of poorly defined concepts that it is impossible to draw any conclusions of use to the general melanoma population.

    Many patients with diverse diseases have derived real comfort and benefit from tests/therapies that are not scientifically proven. However, to go through the literature supporting such tests/therapies and sift out data that makes us feel newly anxious is an unfortunate and unnecessary result.

    Keep in mind that we are all (melanoma folks and non-melanoma folks) subject to potentially malignant cells every day, in the blood and elsewhere, that are of no real consequence, whether detected (scary) or not (not scary). Our bodies deal with them, and we go on usually to die of something else we never had the wit to be scared of in advance.

    Enjoy each day and just say no to the boogie man of anxious speculation. :)

    ~Wendy

    #63703
    RJoeyB
    Participant

    TreeFrog wrote:

    Keep in mind that we are all (melanoma folks and non-melanoma folks) subject to potentially malignant cells every day, in the blood and elsewhere, that are of no real consequence, whether detected (scary) or not (not scary). Our bodies deal with them, and we go on usually to die of something else we never had the wit to be scared of in advance.

    Such a terrific point. Even if there was a definitive test to detect even the most minuscule amounts of melanoma (or other marker) cells in the bloodstream, with all that’s been learned about the role of the immune system in mediating a response to some cancers, what would that really tell us? This is a gross exaggeration on my part, but it’s possible every person has melanoma cells present in their body at some point, but in the vast, vast majority of people, the immune system, unassisted by any therapies, is successfully identifying and eliminating those mutated cells before they can multiply to unmanageable numbers.

    Joe

    #63704
    farang100
    Participant

    I agree with the last two posts.

    In fact the whole point of this test anyway is to improve outcomes for patients not to scare people.

    The body’s immune system kills cancer cells everyday so yeah I wouldn’t start panicking about this at all.

    #63705
    marti
    Participant

    Being probably just “upgraded”to stage III, living next to Germany (The Netherlands) I have followed the discussion with great interest.

    Personaly I have seen no reason to undergo a therapy, or non-proven testing, in whatever country, nor want to be treated by doctors that are not oncologists, even if my insurance would most probably cover this alternative treatment.

    Its a personal choice, and one should follow their hearts, but I dont see any scientific reason to follow therapies like this clinic offers.

    Marti

    #63706
    farang100
    Participant

    marti wrote:

    Being probably just “upgraded”to stage III, living next to Germany (The Netherlands) I have followed the discussion with great interest.

    Personaly I have seen no reason to undergo a therapy, or non-proven testing, in whatever country, nor want to be treated by doctors that are not oncologists, even if my insurance would most probably cover this alternative treatment.

    Its a personal choice, and one should follow their hearts, but I dont see any scientific reason to follow therapies like this clinic offers.

    Marti

    This discussion has gotten a little railroaded by the circulating tumour test.

    However it should be noted that the Bio Med Clinic is a mainstream cancer clinic that offers complimentary therapies as well to lessen the effects of mainstream treatments.

    ie it looks at preserving quality of life along with trying to get the best outcomes for patients using radiation/ chemo etc combined with hyperthermia, vit c, mistletoe etc

    #63707
    greenshaek
    Participant

    I’m honestly not really sure I buy it either. I recently attended a conference about melanoma and patients were asking what they can do to help themselves. The doctors strongly advised AGAINST mistletoe, saying that it actually has a negative effect on melanoma.

    I’m interested in the Cimetidine / Tagamet aspect, though … does anyone have any experience with this or take this medication? Have any doctors recommended it or has anyone been involved in studies?

Viewing 15 posts - 31 through 45 (of 46 total)
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