AE37 Vaccine Trial - for recently treated high-risk patients

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  • lightandwind
    lightandwind Member Posts: 754
    edited November 2012

    Special K, thank you! Interesting. Glad to know the placebo isn't a sugar pill since I don't eat sugar anymore.  sure would like to know which one I'd be getting though. Are the side effects you have the same as those that they say may occur? I wonder if there is a way to find out which one you have by how you feel?

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

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  • fredntan
    fredntan Member Posts: 1,821
    edited November 2012

    And the neuvax people wouldnt accept me since i had 13 + nodes.



    I think i might be getting the placebo since i didnt feel icky, but being 4 weeks out from diep, maybe i dont know what good feels like

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2012

    Just wanted to clarify that in our trial there is still a sort by histological type - the A2negative types go to the AE37 arm and the A2positive go to the GP2 arm.  I worked in Transfusion Services at the time I was diagnosed and a friend I worked with at that time went to work doing histological typing for the lab that handles organ transplants here in Tampa.  She did my typing - I am A2+, so I know I am sorted into the GP2 arm, but don't know if I am getting the vaccine or placebo. 

    In terms of being able to figure out what you are receiving - I think the SE are too nebulous to determine it.  Some of the SE from the sargramostim mimic the SE from the vaccine.  I don't feel very well after the injection but I didn't feel very well after Neulasta either, so...  The placebo is a similar drug so I think it is impossible to tell.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

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  • fredntan
    fredntan Member Posts: 1,821
    edited November 2012

    And I felt fine after neulasta. So who knows. Hey mods I think I hit report post. It was mistake

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  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited November 2012

    So I got a call back but we were at dinner with friends. They said you have to enroll first then go down for a week. Then 3 days every 3-4 weeks. Then the boosteres every 6 no but after the boosters you have to go back two weekslaterlater. I didn't know about the two visits every 6 mo. She is gonna CA back Tuesday to talk some more about it.

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  • Maggs09
    Maggs09 Member Posts: 193
    edited November 2012

    Can someone, please explain what exactly HLA A2 and A3 stands for and it's significance. How do I know if I'm positive or negative?

    How is it related to HER2?

    I'm confused...

    Thanks!

    Mahda

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

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  • Maggs09
    Maggs09 Member Posts: 193
    edited November 2012

    Thank you for explaining.

    Does this HLA have any impact on prognosis as well?

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

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  • Maggs09
    Maggs09 Member Posts: 193
    edited November 2012

    Being HER 2 "0", I don't qualify for AE37;

    I think Neuvax E75 is also only for HER 2 at least 1 or higher, am I correct?

    I have a friend (35), who is triple neg, had neojuvant chemo with "0" response, surgery and just finished rads. She is doing great, but I think this vaccine trial would be something for her...

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

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  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited November 2012

    Hey guys, Just talked to MDA's enrollment nurse.  I will enroll when I got down in January.  It ends up being like 15 visits over thd course of the 2.5 years. 

    **She did say that you are NOT going to get the vaccine if you are on the control arm.  The earliest it will be ready for production is 4 years and we will all be out of the "window" for receiving it.  She said that needs to come out of the enrollement paperwork. 

    **Also, I am BRCA pos and its not an exclusion, which is really exciting. 

    Hope you guys are doing well. 

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  • Maggs09
    Maggs09 Member Posts: 193
    edited November 2012

    Hi MiniMom, are you HER2 negative but higher then "0"?

    I was looking into this trial but my path shows HER2 0 and apparently this is an exclusion. I have already started a request of having my pathology "retested" by independent pathologist.

    But it may take about 6-8 weeks for everything to be completed.

    I hope you had a great weekend! Please, email me when you have time.

    Magda

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

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  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited November 2012

    Magda, I am Her2 +1, which is still technically Her2 negative.  THats my MDA score, I had a higher Her 2 score and FISH score from Vandy, but MDA used their own.  With the vandy score I could have done the Neuvax, but not with MDA's score.  Weird huh!

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  • Maggs09
    Maggs09 Member Posts: 193
    edited November 2012

    That's great that you can still qualify. Like I said I'm in the process of getting my path re-done by pathologists associated with Harvard, like one other girl recommended. Who knows if it still going to be the same or different. It doesn't hurt to try and it's not costing me anything as it is a part of my benefits. I read a lot about the vaccine and it looks promising.

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  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited November 2012

    Tech:  I hope the nurse from MDA is wrong also.  I don't see why it would hurt? But she said her principle investigtor at MDA said that statement was wrong.  Who knows, I guess if its in the release you can always try to fight for it! 

    Magda:  Yay for the Harvard review! I have been scouting the vaccines for a while, but this is the first that I actually qualify for.  Not looking forward to the 15 flights down to MDA, but hey if it works thats amazing!  The nurse also said that if I do recon at MDA, the visits can co-incide and that you have to visit ALOT for recon.  She even said that if you do a TRAM flap you spend 3-4 days in ICU down there.  I guess I will find out more about all of it in January!  You have 6 mo from the time you are finished with your treatment to enroll, so after Christmas, when  you are done with rads you can look into it.  MDA said they only have 24 spots left, but they won't be enrolling anyone else til after the holidays.  So I wouldn't worry too much about your path reports taking 6 weeks!

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

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  • fredntan
    fredntan Member Posts: 1,821
    edited November 2012

    I read that earlier today. Does this mean they are going to start phase 3 soon?

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  • mary625
    mary625 Member Posts: 1,056
    edited November 2012

    I really hope I can get into Phase III. They wouldn't let me in Phase II because of Hashimoto's thyroiditis which is classified as an anti-immune disorder.

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  • Maggs09
    Maggs09 Member Posts: 193
    edited November 2012

    Mary, do you know if for Phase III they will still be only accepting HER2 of at least 1 or higher?

    My path report shows HER2-0.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

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  • fredntan
    fredntan Member Posts: 1,821
    edited November 2012

    I am confused. I just started phase 2 last month.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

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  • Maggs09
    Maggs09 Member Posts: 193
    edited November 2012

    Does anyone know anything more about eligibility criteria for phase III?

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

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  • Maggs09
    Maggs09 Member Posts: 193
    edited November 2012

    I've already got all paperwork submitted last Friday , (consents and all), and was told that because my situation is complicated it may take about 5-8 weeks to get full report. They will re-do full pathology for breast and colon, review all scans from the start before they can do a full report and provide own recommendations. Since original stuff was done at the University Health Network in Toronto, new review will be done either at MDA or Sloan K in New York. I guess they will try to match the best combination of specialists with patient-specifics.

    I just hope that my colon and Her2 at 0 will not "cut me out" again from being on the vaccine trial.

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