THERE MIGHT BE A TREATMENT FOR YOU!!!!!

Discussion Board Forums Good News / What’s Working THERE MIGHT BE A TREATMENT FOR YOU!!!!!

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  • #93251
    anne-bjerkenaas
    Participant

    Thank you Gavin. I am always worried about writing something that comes out completely wrong, maybe with a totally opposite meaning. It does not matter if it gives you a good laugh, a laugh only makes living better. I am more worried about not been able to get this important information out to so that it makes sense for you. ( It is as though I can hear my old English teacher telling me “What did I say!” I am afraid she was right, I should have worked a bit more with the language while I had the opportunity…)

    Wish you all the best.
    Hug,
    Anne

    #93255
    alicia
    Participant

    Dear Anne,

    thank you for this very valuable information!!
    I have asked in Sweden my mother’s oncologist to do DNA-testing and she said that the question has been asked before by other patients, but she said that “the older professors” said “we don’t do that here”. It’s very strange and I will try to investigate more on why they don’t do this, or maybe it’s only in my mother’s hospital.

    Please keep us updated on how your husband is doing!

    My mother (69 years) was diagnosed in April 2015, with Klatskin’s tumour. She underwent a liver resection (about 75 % of the liver was resected + bile ducst) in Karolinska hospital. They are very good in liver surgery.
    She was cancer-free for about 8 months, and then they found out she has a tumour near the liver (which they deem unresectable ).

    So now she has chemo, gemc/cisplatin.
    They didn’t give her chemo after surgery, but I have read the most recent recommendations where it says that doctors should consider to give chemo after surgey, for preventive reasons.

    In Sweden, we have national cancer-programs, which are national recommendations for a type of cancer in order to make care equal in the country.
    The program on cholangocarcionoma is here (only in Swedish)

    http://www.cancercentrum.se/globalassets/vara-uppdrag/kunskapsstyrning/vardprogram/kommande-vardprogram/2016/remissrunda-1/gallvagscancer.pdf

    Thank you again for all information about DNA-testing!

    Take care!
    /Alica

    #93243
    gavin
    Moderator

    Thanks for all of that Anne, very useful indeed. And please, no apologies for your English it sounded perfect to me and is better than mine!!!

    My best to you and your husband,

    Gavin

    #93244
    anne-bjerkenaas
    Participant

    Dear Marion.

    As far as I know you can get a DNA-test without any trial, this if you are Danish. As a Norwegian my husband had to get it in a trial.

    Take care,
    Anne.

    #93245
    marions
    Moderator

    Great explanation, dear Anne. It is said that the Danish people represent the most content population. This is a great government initiative. Question is: how many trials are available?

    Hugs
    Marion

    #93246
    anne-bjerkenaas
    Participant

    Dear Marion.

    I am sorry, my English is rather limited. I will try to Explain.

    In Denmark they do run this DNA -test on your cancers DNA once diagnosed, this if you are Danish. As a result of this you might be able to get more aimed treatment for your cancer, this based on the result of the DNA-test.

    In Norway you can only get this DNA-test in a trial called MetAction. Other treatment as chemo are to be tried at first. You will only be able to participate in the trial when standard treatment has stopped working, or if it does not work, and only after the cancer has increased with 20% in diameter.

    Take care,
    Anne.

    #93247
    marions
    Moderator

    Anne….What do you mean by not able to participate? The test can be utilized only if no other treatment worked or the cancer has grown? Or, is the clinical trial available if standard of care has reached maximum benefit or has failed? The latter is pretty much standard throughout the world, as the new approach (other agent) is investigational.

    Hugs
    Marion

    #93257
    anne-bjerkenaas
    Participant

    Dear Marion.

    It makes me both sad and angry that this information has been known among several doctors, professors and others all over the world for so long.

    I did find out about Fishers Ion Torrent Comprehensive Assay when I was told about an ongoing trail in Norway. One of the doctors in charge told me that you were only allowed to participate if no other treatment did work out and if the cancer had grown with 20% in diameter. I think this is a cruel thing to do!!!! Why can they not just offer this test to everyone when diagnosed with cancer? Think about all the suffering and pain a patient has to live with before being able to participate!

    I am planning to write an article about this subject and to post it to all the biggest newspapers in Norway, I do hope some of you reading this will do the same in your countries. This information must be spread!

    Take care.
    Hug,
    Anne.

    #93256
    marions
    Moderator

    Anne….thank you for posting this important information.

    Hugs,
    Marion

    #12775
    anne-bjerkenaas
    Participant

    In July 2015 my husband were diagnosed intrahepatic metastatic cholangiocarcinoma. My husband has metastases in one lymph node, both his lungs, his breast bone, hip, in the back TH5 and L5, and several in his liver. However, his conditions are good in spite of the circumstances. Since diagnosed I have been searching internet, contacting doctors, professors, hospitals etc. in a lot of countries. There are a huge number of unserious offers and information of possible treatments, and as we all know, very limited possibilities if you are among the unlucky ones that gets this diagnose.

    On thing caught my interest. DNA-tests of the cancer. The whole idea is that cancer, no mater where in the body, has it own DNA. To make a very long story short, from the DNA several information can be given, mutations, errors in the repair system, genetic defects etc. That information, the specific information given by YOUR cancers DNA might be able to tell something about YOUR cancer, and about how to treat your cancer. I did not know, but there is a international registers where information about cancer DNA can be put, scientists, oncologists etch do add information about trials, new medications etc. in that register , and if you are lucky, I have been told that approximate 20% of those with cancer are lucky, you will have a match! Something that can be used to treat YOUR cancer!!!

    Nobody in Norway, we are Norwegians, would help us so that my husband could be tested. I therefore contacted Fisher in order to pay for the test to be taken, take a look below. After several calls I came in contact with Fisher in Germany, They came up with several laboratories (, among them some unserious ones too, take a look below). We came in contact with a laboratory in Denmark and they accepted to run the test, however, they were not allowed to be paid since they were a national Danish hospital, and that stopped them, they could not take it for free. Finally we were put in contact with Dr Ulrik Lassen at Rigshospitalet in Copenhagen Denmark, take a look below, he said he could not accept my husband to pay for this test to be taken, national rules etc… however, he had a trial testing cancers DNA and my husband were welcome to participate!!

    We had to pay for and arrange for the biopsy to be taken, we did it at Aleris Copenhagen Søborg in Denmark, and yesterday, near 6 weeks after, they called us!!! There had been a match! The match was in something they called ATM-Gen, it is something wrong in my husbands repair system for this gen, this has caused my husbands cancer. They had found one case, a man with prostate-cancer, the type of cancer does not matter when it comes to DNA, this man had the same ATM-gen defect, and he had successful been treated with a new medication, and they told us that they were now arranging for my husband to get the same medication!!!!! At first my husband is to continue with the chemo he is on, Nordic Flox, it works and they therefore do not want to stop this treatment, in the meantime they will arrange for him to be a patient in Denmark at Rigshospitalet in Copenhagen under Dr. Ulrik Lassen and his team! When the chemo is no longer working my husband will get the new treatment!!

    So PLEASE, all of you, go for the DNA/test and be registered, they might not find a solution for you, but once you are registered you will stay der, and if there comes a treatment, or a trial that fits for you, you will be contacted. If they do find a treatment by testing your cancers DNA, this might save your life, or the life of your loved ones!!!!!!!!

    NB!! Be aware!! There are several unserious offers when it come to DNA-testing, please, do not accept any other test than the test Fisher recommend, we were nearly tricked to by a DNA-test that would have been of very limited, maybe no help at all.

    Take a look at:
    https://www.thermofisher.com/order/catalog/product/4477685
    http://www.esmo.org/Membership/ESMO-in-Your-Country/National-Representatives/Ulrik-Lassen-Denmark
    https://labtestsonline.org/understanding/analytes/cancer-therapy/

    I will let you know when I do have some more information, it might take some months but I will keep you updated.

    I wish you all the best!
    Hug, Anne.

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