Halfway thru the vaccine trial

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Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
in Ovarian Cancer #1
I just got home last night and was sooooooooo happy to land in DFW's 70+ degree time zone. New York was cold, but then we went to Connecticut to visit family for a couple of days and it was FREEZING.

So far I have had literally no side effects, unless you count a slight redness at the injection site, and even that's gone in a couple of days. Of course, I'm getting the lowest dose, so the next group may have different results.

Annie got her first shot last Wednesday and she's doing great, as well.

I get a 3 week break, then go back mid-March. Now that all the paperwork and qualifying data seems to have been worked out, the process goes much more quickly. If I can score a morning appointment, and since the hotel is very accomodating about giving us a late check-out time, we could conceivably head back home the same day. They did a CA125 this time, but the results haven't been posted yet. That's a great perk for MSKCC patients....you can see your lab results online (also appointments and other "stuff").

The Marriott informed us, when I made the reservation for March, that the rates will be considerably higher then. Spring break, maybe?

Carlene

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  • childofthestars
    childofthestars Member Posts: 251 Member
    #2
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    I'm so pleased so far so
    I'm so pleased so far so good
    You go girl
    Michelle x
  • Mwee
    Mwee Member Posts: 1,338
    #3
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    So glad you're doing so well
    with the shots. Yup, the northeast has felt like Siberia this winter. Too bad this study isn't being done someplace tropical! :)
    (((HUGS))) Maria
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #4
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    Mwee said:

    So glad you're doing so well
    with the shots. Yup, the northeast has felt like Siberia this winter. Too bad this study isn't being done someplace tropical! :)
    (((HUGS))) Maria

    No kidding....sign me up for
    No kidding....sign me up for the next trial in Bermuda.
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #5
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    what will happen when trial is done
    I have bee wondering this .will there be follow up visits and scans. When will they know if it works. wishing you the very best..val
  • clamryn
    clamryn Member Posts: 508
    #6
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    After trial is over
    Carlene, you are something girl. I am so glad that you keep us posted on what is going on with you and the trial.

    And one of the great things is that you are not having any bad side effects. That is wonderful.

    I am curious what happens when it is over also. Do they inform you of all the results from the whole group?

    Linda
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #7
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    clamryn said:

    After trial is over
    Carlene, you are something girl. I am so glad that you keep us posted on what is going on with you and the trial.

    And one of the great things is that you are not having any bad side effects. That is wonderful.

    I am curious what happens when it is over also. Do they inform you of all the results from the whole group?

    Linda

    I think generally they
    I think generally they publish the results, once a trial is over. Sometimes they end them early, however, and all that data often gets lost (eg: Taxol maintenance trial).

    There are only 5 injections but the trial, for me, runs Jan thru July- 9 appointments. There are some appointments that I am scheduled for blood work and CT scans, but no injection.

    There was a pre-treatment scan, then one in April and another at the end of the study (July). After that, I am supposed to get one every 3 months, until I relapse or the study ends (which I think is 2 years).

    I have another 5 visits to NY (plus the scans), but only 3 more injections. April, May, and July are appointments that involve other stuff, but no vaccine. They draw blood every time, unfortunately. But they use the port, so it's not so bad.

    Dr S gives me a running commentary when I see him, regarding the study results in general. No one has flunked out yet.

    Carlene
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #8
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    poopergirl14052 said:

    what will happen when trial is done
    I have bee wondering this .will there be follow up visits and scans. When will they know if it works. wishing you the very best..val

    This is only a Phase I
    This is only a Phase I Trial, so I doubt they will declare it a success without more tests.

    I think if most of us (18-24 in all) do not have a recurrence within 2 years of starting the trial, it would thrill everyone beyond words - and no one more than me.

    Carlene
  • annecris
    annecris Member Posts: 44
    #9
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    Hissy_Fitz said:

    I think generally they
    I think generally they publish the results, once a trial is over. Sometimes they end them early, however, and all that data often gets lost (eg: Taxol maintenance trial).

    There are only 5 injections but the trial, for me, runs Jan thru July- 9 appointments. There are some appointments that I am scheduled for blood work and CT scans, but no injection.

    There was a pre-treatment scan, then one in April and another at the end of the study (July). After that, I am supposed to get one every 3 months, until I relapse or the study ends (which I think is 2 years).

    I have another 5 visits to NY (plus the scans), but only 3 more injections. April, May, and July are appointments that involve other stuff, but no vaccine. They draw blood every time, unfortunately. But they use the port, so it's not so bad.

    Dr S gives me a running commentary when I see him, regarding the study results in general. No one has flunked out yet.

    Carlene

    Number 3 down for me
    Hey Hon - been thinking about you and wondering how everything is going- i had my 3rd shot last Wednesday - the 2nd one was a doosey - my arm got all red and blown up from the elbow to the shoulder and I had a fever and flu like symptoms all day Thursday - then by Friday I was fine! Dr. S. said the reaction was OK just meant my immune system was responding and if it occured it would happen with the 2nd or 3rd shot - the 3rd shot last week was no problem - just a little redness at the injection site - so all is well - will be back on the 30th for #4. When are you due back in? It was so great meeting you and Bob - hope we can get together again- you are some NEAT LADY!!!!!!! Stay Strong My Dear - Annie
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #10
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    annecris said:

    Number 3 down for me
    Hey Hon - been thinking about you and wondering how everything is going- i had my 3rd shot last Wednesday - the 2nd one was a doosey - my arm got all red and blown up from the elbow to the shoulder and I had a fever and flu like symptoms all day Thursday - then by Friday I was fine! Dr. S. said the reaction was OK just meant my immune system was responding and if it occured it would happen with the 2nd or 3rd shot - the 3rd shot last week was no problem - just a little redness at the injection site - so all is well - will be back on the 30th for #4. When are you due back in? It was so great meeting you and Bob - hope we can get together again- you are some NEAT LADY!!!!!!! Stay Strong My Dear - Annie

    There you are! I have been
    There you are! I have been wondering where you got off to. My next appointment is March 16th. I am nearing the end of my 3 week break. They called me after my second shot, to check on side effects, and they told me that "one patient" had redness and swelling all the way down her arm. I never thought to text and ask if it was you! I had a bit of redness and itching, but nothing else. No fever. Are you taking the Tylenol before and after the injections? Dr S told me that the only ones who reported feeling flu-ey were the ones who did not take the Tylenol.

    I am going back on the Wednesday schedule, as of this month. That's actually the day they do Phase I stuff. My schedule got thrown off by the weather, and since we have a wider window after the 3rd shot (3 days either way), Dr S encouraged me to make the appointments for Wed, then if something happens, we can reschedule for Friday with no harm done.

    It was great to meet you (and your Bob), too. You should message Joanie....she lives and works in Manhattan and she is awesome - a total powerhouse of energy and funtastic.


    Carlene
  • kayandok
    kayandok Member Posts: 1,202 Member
    #11
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    Carlene and Annie,
    thanks doing this!! You guys give me hopee. So cool too, that you could actually meet. I love this board!
    kathleen
  • Unknown
    Unknown
    #12
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    This comment has been removed by the Moderator
  • kikz
    kikz Member Posts: 1,345 Member
    #13
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    unknown said:

    This comment has been removed by the Moderator

    I wish you both
    the best of luck and thank you for your participation in something that could have lifesaving results.

    Karen
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #14
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    unknown said:

    This comment has been removed by the Moderator

    The trial is at Memorial
    The trial is at Memorial Sloan-Kettering in NYC. It is for women in their first remission. If you think you might fit the criteria, let me know and I will send you the phone number of the trial coordinator.

    1. You must have completed first line chemo with a platinum drug.
    2. You must have either been sub-optimally debulked, or your CA125 after your third treatment must have been significantly elevated (I think at least 55).
    3. You must have been diagnosed stage III or IV
    4. You must be in your first remission, verified by normal CA125 and negative CT scan.
    5. You can't do maintenance treatment while on the trial.

    A good place to look for clinical trials is the NOCC website (ovarian.org). You can also check clinicaltrials.gov but that one is harder to navigate and includes trials for all types of cancer.

    Carlene
  • azgrandma
    azgrandma Member Posts: 609 Member
    #15
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    Hissy_Fitz said:

    The trial is at Memorial
    The trial is at Memorial Sloan-Kettering in NYC. It is for women in their first remission. If you think you might fit the criteria, let me know and I will send you the phone number of the trial coordinator.

    1. You must have completed first line chemo with a platinum drug.
    2. You must have either been sub-optimally debulked, or your CA125 after your third treatment must have been significantly elevated (I think at least 55).
    3. You must have been diagnosed stage III or IV
    4. You must be in your first remission, verified by normal CA125 and negative CT scan.
    5. You can't do maintenance treatment while on the trial.

    A good place to look for clinical trials is the NOCC website (ovarian.org). You can also check clinicaltrials.gov but that one is harder to navigate and includes trials for all types of cancer.

    Carlene

    Thanks Carlene
    Thank you so much for doing this,I pray it will help you. You are an inspiration to me

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