FINISHED VACCINE TRIAL - EVERYTHING A-OK!!!!

annecris
annecris Member Posts: 44
in Ovarian Cancer #1
Hey my sisters - just to let you know i am done with the vaccine trial at Sloan in NYC - had my final monthly check-up and scan yesterday - to quote scan: Everything - UNREMARKABLE (LOL) and "No Evidence of Disease" !!! Will now be checked every 3 months for the next 2 years - at this time I am 2 years NED from the end of chemo and 2.5 years post surgery!!! There is HOPE my SISTERS - NEVER EVER Forget that - STAY STRONG - and when you are not just check in here at this site and you will be RENEWED!! Love You All and Keeping You in My Prayers - MWAHS!!!

Comments

  • jbeans888
    jbeans888 Member Posts: 313
    #2
    That is sooo great. I am
    That is sooo great. I am happy for you and to hear some positive news. There is hope! I was wondering how clinical trials worked exactly. Do you have to pay out of pocket or are they free because it's a trial? I was just wondering because I was watching the show Big C and she had to give insurance information and I thought they where free? Thanks and congradulations again.
    Joyce
  • kikz
    kikz Member Posts: 1,345 Member
    #3
    That is great news.
    I bet you never thought you would be happy to be "unremarkable" even though I believe that all my teal sisters are ABSOULUTELY REMARKABLE!

    Karen
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #4
    jbeans888 said:

    That is sooo great. I am
    That is sooo great. I am happy for you and to hear some positive news. There is hope! I was wondering how clinical trials worked exactly. Do you have to pay out of pocket or are they free because it's a trial? I was just wondering because I was watching the show Big C and she had to give insurance information and I thought they where free? Thanks and congradulations again.
    Joyce

    Joyce...
    I am in the same
    Joyce...

    I am in the same trial as Anne. Trials are not free, except for the drug itself. They still charge for administering the drug, the CT scans, bloodwork, etc.

    The exception would be trials that they have a hard time getting volunteers for. Trials for OC would not be among those, however. Dr Sabbatini told me that he gets 300 emails a week, from women wanting info about trials and/or treatment. He has declined invitations to do interviews (even the Dr Oz show) because he can't accomodate all the women who respond and it makes him feel terrible.

    Carlene
  • jbeans888
    jbeans888 Member Posts: 313
    #5
    Hissy_Fitz said:

    Joyce...
    I am in the same
    Joyce...

    I am in the same trial as Anne. Trials are not free, except for the drug itself. They still charge for administering the drug, the CT scans, bloodwork, etc.

    The exception would be trials that they have a hard time getting volunteers for. Trials for OC would not be among those, however. Dr Sabbatini told me that he gets 300 emails a week, from women wanting info about trials and/or treatment. He has declined invitations to do interviews (even the Dr Oz show) because he can't accomodate all the women who respond and it makes him feel terrible.

    Carlene

    Thanks Carlene for answering
    Thanks Carlene for answering my question since I had no idea how it works.

    Joyce :-)
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #6
    kikz said:

    That is great news.
    I bet you never thought you would be happy to be "unremarkable" even though I believe that all my teal sisters are ABSOULUTELY REMARKABLE!

    Karen

    Love good results
    I am so glad you are ned and I am very proud of you. You give us all hope..val
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #7
    kikz said:

    That is great news.
    I bet you never thought you would be happy to be "unremarkable" even though I believe that all my teal sisters are ABSOULUTELY REMARKABLE!

    Karen

    Love good results
    I am so glad you are ned and I am very proud of you. You give us all hope..val
  • NCEllen
    NCEllen Member Posts: 115 Member
    #8
    Following along...
    I'm so happy to hear of your good news and continnued health as well as Carlene's on this Phase I vaccine trial. I started the follow-up Phase II trial of these antigens last week (GOG-0255). Although it's a double blind study, I know I'm getting something - it would be great if I was getting the multiple antigens but I'll never know.
    It's sponsored by Dr. Sabattini of MSK, but the study is being conducted at different sites around the country. My gyn/onc is the lead on this in my area and is able to enroll 2-3 patients for the trial. I was happy to volunteer to be his first. Got the 'shot' last Thursday and will have 10 more (hopefully) as long as I qualify. It hurt like crazy but just for a couple of days.
    Thanks to all who were brave enough to enter the Phase I trial. I hope Phase II works as well and would be interested if anyone else is doing Phase II at this time. El
  • cfont11
    cfont11 Member Posts: 115
    #9
    Trial
    This is great news! I am so happy for you. You are so brave. Thanks for the hope and encouragement.
  • EnglishGal
    EnglishGal Member Posts: 101
    #10
    Good news!
    I like hearing stories like this!
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #11
    NCEllen said:

    Following along...
    I'm so happy to hear of your good news and continnued health as well as Carlene's on this Phase I vaccine trial. I started the follow-up Phase II trial of these antigens last week (GOG-0255). Although it's a double blind study, I know I'm getting something - it would be great if I was getting the multiple antigens but I'll never know.
    It's sponsored by Dr. Sabattini of MSK, but the study is being conducted at different sites around the country. My gyn/onc is the lead on this in my area and is able to enroll 2-3 patients for the trial. I was happy to volunteer to be his first. Got the 'shot' last Thursday and will have 10 more (hopefully) as long as I qualify. It hurt like crazy but just for a couple of days.
    Thanks to all who were brave enough to enter the Phase I trial. I hope Phase II works as well and would be interested if anyone else is doing Phase II at this time. El

    Ellen....
    The vaccine trial
    Ellen....

    The vaccine trial Annie and I are in is a totally different trial. Ours has not yet advanced to Stage II, and might never do so. I'm excited that you are able to participate in a Stage II trial. That sounds very promising.

    Carlene
  • rose_marie
    rose_marie Member Posts: 75
    #12
    NCEllen said:

    Following along...
    I'm so happy to hear of your good news and continnued health as well as Carlene's on this Phase I vaccine trial. I started the follow-up Phase II trial of these antigens last week (GOG-0255). Although it's a double blind study, I know I'm getting something - it would be great if I was getting the multiple antigens but I'll never know.
    It's sponsored by Dr. Sabattini of MSK, but the study is being conducted at different sites around the country. My gyn/onc is the lead on this in my area and is able to enroll 2-3 patients for the trial. I was happy to volunteer to be his first. Got the 'shot' last Thursday and will have 10 more (hopefully) as long as I qualify. It hurt like crazy but just for a couple of days.
    Thanks to all who were brave enough to enter the Phase I trial. I hope Phase II works as well and would be interested if anyone else is doing Phase II at this time. El

    GOG-0255
    Hi Ellen, I just started this phase II trial. I had my first vaccine Oct 28, 2011. I was looking up some additional information on Google and found your post from July. I am at Stanford in CA and there are 6 of us on this trial. I have had a total of 3 vaccines with my next one due Dec 9th.
    I have not had any problems except it hurts like the devil when it is being injected. I am told it is because the vaccine is very cold (has been in pharmacy freezer). I have very little redness and some tenderness. Other than that, I feel fine.

    We should keep in touch and compare notes.

    Rosemarie
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #13
    EnglishGal said:

    Good news!
    I like hearing stories like this!

    Yup, good news is always
    Yup, good news is always appreciated on the board.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #14
    Radioactive34 said:

    Yup, good news is always
    Yup, good news is always appreciated on the board.

    Radio....this was an old
    Radio....this was an old post. Annie recently had surgery for a recurrence and is no longer in the trial, but her surgery was successful and she is starting a new chemo soon.

    I think they are still recruiting, though, if anyone else is interested in looking into the vaccine trial at MSKCC. It is for women in their first remission.

    Carlene
  • NCEllen
    NCEllen Member Posts: 115 Member
    #15
    rose_marie said:

    GOG-0255
    Hi Ellen, I just started this phase II trial. I had my first vaccine Oct 28, 2011. I was looking up some additional information on Google and found your post from July. I am at Stanford in CA and there are 6 of us on this trial. I have had a total of 3 vaccines with my next one due Dec 9th.
    I have not had any problems except it hurts like the devil when it is being injected. I am told it is because the vaccine is very cold (has been in pharmacy freezer). I have very little redness and some tenderness. Other than that, I feel fine.

    We should keep in touch and compare notes.

    Rosemarie

    I had to opt out :(
    I was forced to opt out of this trial in Sept. My CA-125 was 3,7 and 9 (starting in July). By the time I had my 4th inj. the numbers shot up to 159 and the CT was positive for pelvic lymph progression...so- Now I'm on a new trial (OSI-906-202, 2009-010319-34, NCT00889382). It's oral meds for three days (meds are glucose inhibitors to suppress possible glucose receptor tumor cells), along with dose dense weekly Taxol. I am happy to say that after 6 weeks my CA-125 is back down to 11 and CT shows 56% overall reduction in tumor growth w/stability. I think it's the Taxol myself. The OSI med has made my EKG's a little abnormal, so their still trying to adjust the dose.

    Anyway (sorry, got off the subject :).....my reaction to the vaccine besides yes making my arm really sore, was that @ the injection site I would get redness and lots of swelling- like a bad reaction to a mosquito bite, but it would go away after a couple of days. I thought maybe I was getting the 'good stuff' because of the reaction- but then the markers started to rise, so who knows. It's hard to participate in double blind studies because you just want to know where you stand in the research. The one great thing about trials is that the docs watch you like a hawk so as to not get you out of whack if it's not working.

    I'm happy that I did the trial, even if it didn't work for me then at least they got some good info for another sister so it will work- hopefully You and many others! My daughter was convinced that the vaccine caused the trigger for the relapse-but I told her, if you don't try you'll never know. Remember - you are being watched very carefully for any adverse reactions so go, go, go!!!! :)

    For now I'll try just about anything within reason for my daughter and my grand-daughter and really possibly the ultimate futures of our sisters right? Please keep us posted on how well you respond. I pray and wish you the very best just as Carlene had such good results with her trial (Carlene- you rock when it comes to daring OVCA to mess with you! That is Texas all the way :) Take care - El
  • rose_marie
    rose_marie Member Posts: 75
    #16
    jbeans888 said:

    Thanks Carlene for answering
    Thanks Carlene for answering my question since I had no idea how it works.

    Joyce :-)

    Clinical Trials
    Hi Joyce, I am in a clinical trial at Stanford. The injections are free and so are the exams and some of the blood work (research specimen.) My own health insurance pays for my CT/Pet scans and any additional lab work needed like the CA125, CBC and urinalysis.

    It is usually all spelled out for you by the hospital doing the research.

    Rosemarie

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