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  • #63678
    cohanja
    Participant

    It’s interesting that it says “Meat and poultry are the primary sources of dietary CoQ10”. . .at the same time we’re often told to avoid meat for a healthier diet

    #63679
    Catherine Poole
    Keymaster

    I have a patient who does mistletoe injections. I couldn’t find anything harmful about them, but I couldn’t find any compelling evidence they do anything either. So as long as you tell your doctor about these supplements when other therapies are in use, I believe you can do what you’d like. But there isn’t any supplement that will prevent recurrence that I’ve seen.

    #63680
    farang100
    Participant

    Here is a good website with details on Co Enzyme Q10. It also has references to proper research papers with links.

    http://www.integrativeoncology-essentials.com/2012/04/coq-10-may-reduce-the-risk-of-developing-melanoma-and-reduce-recurrence/

    I am also taking cellfood which is supposed to oxygenate the blood and again there is research backing this for help against cancer. Add to that fish oil and organic cold pressed flaxseed oil and that is my supplement approach to melanoma.

    Apparently they cannot now accurately map the SN(s). So apart from waiting are there any other non invasive tests that could detect cancer in the lymph nodes? eg ultrasound, thermograph, blood tests?

    #63681
    Catherine Poole
    Keymaster

    If the melanoma cells are microscopic other than a lymph node dissection, there are no tests for it. It becomes a wait and see. You could look into a clinical trial but there are few for stage III. Where do you live? I can do a search on trials for you if you’d like.

    #63682
    farang100
    Participant

    I am on the other side of the world to you now in Perth Australia.

    I understand that US cant pick up very small cancers but I suppose it is the best option for me.

    The other thing is that even if you have stage 3 which I don’t know whether I do or not it seems to me that there aren’t any really good treatments for stage 3 apart from surgery ie weigh up quality of life against side effects of treatments and potential increases in survival.

    Am I wrong in assuming this? Interferon, chemo, and radiation do not really offer much do they from what I have researched?

    Some of the newer treatments might but they are reserved for stage 4 normally and even those that do have considerable side effects.

    I guess what I want to know is are there any relative non invasive treatments for advanced melanoma that offer some survival benefit?

    #63683
    Catherine Poole
    Keymaster

    So they consider you stage II? I would ask about this, perhaps you could be considered unresectable III? Here is a contact for a trial you might reach out to: Austin Health, LICR Melbourne Austin Branch Recruiting

    Heidelberg, Victoria, Australia, 2084

    Contact: Noel Micallef +61 3 9496 3088 Noel.MICALLEF@austin.org.au

    Principal Investigator: Jonathan Cebon, MBBS, FRACP, PhD

    #63684
    farang100
    Participant

    I don’t know what stage they consider me I am only going on the pathology as without a dissection of nodes you cant really tell.

    I have had an US already which came back negative so I guess at least I am potentially still stage 2 but could be 3 with microscopic nodes.

    I could even have stage 4 according to the doctors even thou I have had a negative pet/cat scan as I might have small cancers somewhere distant that pet scan cant yet pick up.

    The doctors here describe me as a complex case!

    It is all very disturbing and distressing to me as I imagine it is to many people.

    Melbourne Victoria is a five hour plane ride away :)

    #63685
    TreeFrog
    Participant

    Hi Farang,

    Thanks for the excellent link to more comprehensive info on CoEnzyme Q10.

    As to this and other fairly safe but unproven preventative strategies, I think that I and others research and use them as much for our mental health as anything else (for, of course, the mind is hardly separate from the body). Finding a strategy that we believe will enhance our future health gives us peace of mind, which itself is PROVEN to enhance our health. :)

    Just try not to go in for anything too flaky. :D

    Best wishes,

    ~Wendy

    #63686
    cohanja
    Participant

    The CoEnzyme Q10 seems really expensive. Tumeric is more expensive than others but cheaper than CoEnzyme Q10. Vitamin D is relatively inexpensive, Green Tea is somewhere in the middle cost-wise. Fish oil, Flaxseed oil. . not too bad in terms of cost. But it all adds up and to keep taking all of it everyday gets expensive.

    #63687
    farang100
    Participant

    I am at a bit of a dead end now with my treatment as now I do ultrasound every three months in lieu of not been able to do the SNB.

    I don’t like the idea of just sitting around waiting for something possibly bad to happen especially as my melanoma was so large and deep.

    I contacted a cancer clinic in Germany that combines conventional with alternative treatments and sent them my pathology and they replied with a list of possible treatments :

    “From my point of view it is necessary to perfuse the right leg at high temperature (48°C) with either chemotherapy or tumor factor-alpha, moderate whole body hyperthermia to prevent distant metastases and to boost the immune system, immunostimulation according to the test of the anti-cancerous immune cells, the in case stimulator Cimetidine, the tumor vaccine “Rigvir”, loco-regional deep hyperthermia with capacitive coupled devices (13.56 MHz) locally at the right calf and others. It is important not to start too late.”

    I guess my question is has anyone been down this route? Do the treatments sound viable? It is very expensive but my prognosis is poor and maybe it is worth trying?

    #63688
    greenshaek
    Participant

    Hello, I was just wondering which German clinic you had contact with? I live in Germany and have recently upgraded to stage 3 and would love to know which clinic is offering this type of information!

    #63689
    farang100
    Participant

    greenshaek wrote:

    Hello, I was just wondering which German clinic you had contact with? I live in Germany and have recently upgraded to stage 3 and would love to know which clinic is offering this type of information!

    I just got back from the clinic in Germany last week very impressed indeed.

    I went to the Bio Med Clinic in Bad Berzanberg (spelling).

    Dr Migeod and his team are really good. If you have health insurance in Germany then you can use it otherwise it is a bit expensive.

    However I would say it is worth the expense.

    I did localised hyperthermia on the groin area and also whole body hypothermia, mistletoe injections to boost immunity, vitamin C injections, magnetic therapy and something for lymph nodes forget what that was.

    They also do targeted chemo with hyperthermia low dose and other mainstream mixed with alternative therapies.

    They also do a full blood tests with something extra that is cutting edge and a good guide to how your treatment is progressing and that is the Maintrac Circulation Tumour Cell test. This test tells how much melanoma is circulating around the body and it is a good baseline to keep testing to see if the therapies that they are using are working. Apparently according to the doctor there it is a better predictor of stage than tumour thickness , breslow etc

    Very nice environment great staff very positive and reaffirming and the doctor who incidentally was a mainstream oncologist before he changed over is very supportive, positive and has had a lot of good results with patients.

    So I would go for it cost for me for one week including accommodation was around 6300 euro.

    #63690
    cohanja
    Participant

    “They also do a full blood tests with something extra that is cutting edge and a good guide to how your treatment is progressing and that is the Maintrac Circulation Tumour Cell test. This test tells how much melanoma is circulating around the body”

    Is this something that can be used to monitor Stage I NED patients to see if there is recurrence?

    #63691
    Catherine Poole
    Keymaster

    No there is not a blood test for stage 1 to monitor if you have disease. The LDH is watched in those with tumor progression/regression.

    For Germany, we highly recommend the clinic in Essen, University Hospital Essen

    Center for Cancer Research

    Hufelandstraße 55

    45122 Essen, Germany

    +49 201 7232430

    http://www.uk-essen.de Dirk, Schadendorf is excellent. Or check our other resources for global locations: http://melanomainternational.org/web-resources/global-resources

    #63692
    farang100
    Participant

    Catherine Poole wrote:

    No there is not a blood test for stage 1 to monitor if you have disease. The LDH is watched in those with tumor progression/regression.

    For Germany, we highly recommend the clinic in Essen, University Hospital Essen

    Center for Cancer Research

    Hufelandstraße 55

    45122 Essen, Germany

    +49 201 7232430

    http://www.uk-essen.de Dirk, Schadendorf is excellent. Or check our other resources for global locations: http://melanomainternational.org/web-resources/global-resources

    The Maintrac Circulating Tumor Test can be done for any stage of melanoma.

    It measures how much melanoma is circulating in the blood stream. Basically if anything escapes from the original tumour when it is excised which it invariably does it is found in the bloodstream.

    This test measures the level and you do follow up tests to see if the levels go down with whatever therapies you undertake.

    A lot of research has been done on it but it has not yet been taken up by mainstream melanoma or for that matter mainstream oncology departments. The same thing with hyperthermia really.

    You can ask your oncologists or melanoma specialist about it or you can have a look at the research papers of which there are many.

    Here is a link to the Maintrac website.

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

Viewing 15 posts - 16 through 30 (of 46 total)
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