TAILORX trial results Monday, September 28

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voraciousreader
voraciousreader Member Posts: 7,496
edited April 2016 in Just Diagnosed

stay tuned! Results will be disclosed at the European Cancer Congress!

ยซ13456

Comments

  • SchoolCounselor
    SchoolCounselor Member Posts: 452
    edited September 2015

    thanks for sharing. I'm eager to hear the results

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2015

    yes! There are so many of us that have been on pins and needles waiting!

  • treelilac
    treelilac Member Posts: 245
    edited September 2015
  • katcar0001
    katcar0001 Member Posts: 621
    edited September 2015

    Just 7 more days....

  • bevin
    bevin Member Posts: 1,902
    edited September 2015

    Voracious.. I know we can all count on you to put this all in "English" for us too when the results are finally made public. You are amazing at reducing all the scientific data in to understandable layman terms.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2015

    Thanks Bevin....I will do the best I can! I got a lot of laymen experience being married to an engineer. I've spent decades begging him to explain things to me in a simple fashion. Likewise, he expects me to speak "logically." The funny thing is that he never had to take a class in statistics and I did. Furthermore, I believe statistics is the most important class to take in college! Presently, I'm a literacy volunteer and I've been concentrating on teaching my student statistics. We read all kinds of news articles where statistics are mentioned and I help her understand the article in easy language. Suffice to say, she is enjoying the lessons....

    Now...with respect to TAILORX....I'm not a gambler, but I'm worried that there hasn't been enough recurrences in the few chosen years to be statistically significant. I hope I'm wrong....

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited September 2015

    Bosum -- there is NO choosing the wrong treatment. We all chose the best we could, at the time we made it. This study is a great example -- nobody knows, even know, what the clear answers are


  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2015

    VR - This is off topic but I really love that you're teaching your student statistics and how to use that knowledge. That's pretty creative of you and will give her great tools for life. Thanks for volunteering.

  • bevin
    bevin Member Posts: 1,902
    edited September 2015

    VR - ditto what hopeful said ! and a giant thank you ahead of time! your skill set amazes me and I only hope my own child develops these skills.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2015

    Bosum....On Sept 28, the committee will send out press releases with links to journal articles. The journals will publish online the results and subsequently, the journals will publish the study in their paper journals. If you have access to a library, they usually have access to these articles through their own consortiums.


    When there are important "landmark" studies, there are accompanying peer responses released in the journals as well. Look for those on Sept 28 as well!

    And finally, all those initial press releases are gobbled up by the medical writers. Then, over a few days, you will begin seeing the results of the trial all over the media. That's when things get tricky. Not every medical writer gets the details correctly....so titles of news articles and lead ins to medical news reports by anchors leave a lot unsaid or mistated.

    That said, when the journals publish the results online and then in the actual journal, that is what needs to be read and understood.


    As American Cancer Society officer, Dr. Otis Brawley has said before a meeting before hundreds of medical writers, there is a lot of work to be done by the established medical writers, because unfortunately there is still too much public misunderstanding about cancer.


    What I find groundbreaking about this study is that each person who has a low or intermediate score should be able to make an individual direct association. That is huge! Dr. Eric Topol has predicted that in the near future, genomic tests will be so specific, that it will change the way of how trials are conducted. No longer will we have to approximate how a study impacts us. This trial paves the way for how studies will occur in the near future. This is what "individualized" medicine is all about!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2015

    Oh! One more thing! I'm expecting all of you medical sleuths to help me on that day. So let's all sleep well on Sunday night and be refreshed on Monday! There's a lot of mental work ahead for all of us.


    And please....let's all understand that when the results are released, let's not beat ourselves up or second guess the decisions we previously made. We all made the best decisions that we could, given the info we had when we were diagnosed.

    ๐Ÿ’ž๐Ÿ’ž๐Ÿ’ž๐Ÿ’ž๐Ÿ’ž๐Ÿ’ž๐Ÿ’ž

  • 123JustMe
    123JustMe Member Posts: 385
    edited September 2015

    Sorry for my ignorance voraciousreader but what does this mean?

    " What I find groundbreaking about this study is that each person who has a low or intermediate score should be able to make an individual direct association."

    My MO never ordered the Oncotype post surgery because she thought my score would be between 4 and 7. So I had it order it after the final surgical path report was done. (I am a little neuroti)

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2015

    just....when the TAILORX trial was conceived, it wanted to move more patients out of the dreaded intermediate scores group. So, the TAILORX trial should better pinpoint at what OncotypeDX precise number chemo would be beneficial.


    That said, I am surprised that your doctor could guess or would want to guess, what your score would or should be. This OncotypeDX test was designed to give doctors and patients better info regarding the need for chemo. A decade or two ago, doctors knew they were over treating ER + patients with chemo. The test was developed so more patients could be spared chemo. The interesting finding of the test was that it confirmed that the genomics of the tumor sometimes did not line up with the traditional pathology Scarff Bloom Richards grading system. That is why it is now recommended according to the NCCN guidelines.

  • katcar0001
    katcar0001 Member Posts: 621
    edited September 2015

    I am seconding what VR said above. Both my OS and my MO were convinced my oncotype was low. They didn't think I needed the test. It was low... but just barely. I don't see how any doctor--no matter how qualified--could make an estimation. There are just too many genetic variables.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited September 2015

    I had an intermediate score and have no regrets about my decision to have chemo, but am anxious and excited to see how this will help others! Thanks VR and others for all of your help in understanding the trial.

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited September 2015

    About not ordering an Oncotype: When I went to an NCI-designated cancer center for a second opinion, the MO I saw there (the "expert") said that there was no need to order an Oncotype score for the right-side cancer. That's fine, and didn't really surprise me much. However, he also stated that IF I had only had the right-side cancer he still wouldn't have ordered an Oncotype on it. He said there was "no need", because it was only 1.1cm, grade 1, and Ki67 was 5%. (Even though that side was multifocal and had the ITCs.) I find that very strange, as the majority of women on this board with similar stats as my right-side tumor have had an Oncotype done.

  • katcar0001
    katcar0001 Member Posts: 621
    edited September 2015

    One just never knows... I have seen women with very tiny tumors have high oncotypes.

  • 123JustMe
    123JustMe Member Posts: 385
    edited September 2015
    I know scary isn't it that a physician would actually say out loud with the patient in the room "I think it will be between 4 and 7". ๐Ÿ˜ž

    So I called the office later and asked for it to be done.

    A reminder for everyone to please be your own advocate!
  • 123JustMe
    123JustMe Member Posts: 385
    edited September 2015
    Katcar,
    Do you know how ER/PR positive your tumor was?
  • Sloan15
    Sloan15 Member Posts: 896
    edited September 2015

    My doc didn't order an OncotestDX either. I thought he did, but it was some other onc test... I was nearing the end of the recommended period for chemo, so I changed doctors and decided to do chemo. It STILL makes me mad.

    Does anyone know if insurance will cover it AFTER starting chemo?

    Also, my tumor was left side. What does left or right have to do with an oncotest?

  • Sloan15
    Sloan15 Member Posts: 896
    edited September 2015

    Oh, and the McGee Equation estimate oncoscore. I am estimated to be in the intermediate range, so I'm looking forward to the TayloRx prelim results, too!


  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2015

    http://www.ncbi.nlm.nih.gov/pubmed/23503643

    http://www.ncbi.nlm.nih.gov/pubmed/25932962


    Above links describe the McGee Equation....

    What the formula attempts to do is deem the OncotypeDX test unnecessary for most low grade tumors. While the formula seems like a good idea at saving money, I have difficulty in believing that it would or should usurp the OncotypeDX test, IMHO....

  • katcar0001
    katcar0001 Member Posts: 621
    edited September 2015

    123justme - The IHC test came back 100% for both. However, on the Oncotype scale, ER was 8.7 and PR was 7.8, which I found a little strange. I guess IHC is more subjective? The other thing is that the lab that prepared the sample to send to Genomic Health picked the most ugly part of the sample. Who knows if that is the section the pathologist at the hospital reviewed.

    Yes, we must be our own advocates! I am glad you pushed it.

  • Sloan15
    Sloan15 Member Posts: 896
    edited September 2015

    Thank you Rose. I will ask for it!

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited September 2015

    Sloan15, I think you might be asking about right vs left side because of my post. There is no difference, it's just that I had bilateral tumors and only one side's tumor was tested.

  • 123JustMe
    123JustMe Member Posts: 385
    edited September 2015
    Drum roll please! ...and the Oncotype Dx results came back at 15! (Not really close to I think between 4 and 7!). But at least it is still in the low risk group. (Barely). ๐Ÿ˜”
  • katcar0001
    katcar0001 Member Posts: 621
    edited September 2015

    Very good news, 123justme!

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited September 2015
  • 123JustMe
    123JustMe Member Posts: 385
    edited September 2015
    Thanks girls! Not quite between 4 & 7 but still in the low risk group...
  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2015

    just!...I'm a 15 too! I'm over 5 years out and doing well!!!

    ๐Ÿ’‘

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