MSK is evaluating my records...

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
They have agreed to see me at Sloan Kettering, if my records pass muster. I am having the records faxed this week. I just need to get a new thyroid profile done, and have scheduled that blood draw for tomorrow.

The scheduling nurse has reserved a slot for me on Jan 19th, but she has to check with the doctor, to make sure he is free.

So many clinical trials come to naught, but if this were to pan out, it could lead to a vaccine that would prevent ovarian cancer, much like the vaccine for the HP virus that causes cervical cancer. How exciting it is (potentially) to be part of such monumental research!

Wish me luck, ladies!

Carlene
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Comments

  • froggy1
    froggy1 Member Posts: 205
    #2
    exciting!!!
    Wow Carlene,
    This is so exciting. What did your regular gyn/onc. think? I admire your tenacity. Keep us posted.
    Ginny
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #3
    Wow
    That's where my mother is treated and where Nancy 591 is treated. Let me know who they assign you to. I am surprised by your choice to change. NY is a far cry from TX...Let me know what they say!
  • kayandok
    kayandok Member Posts: 1,202 Member
    #4
    This is excting
    stuff, Carlene! You may be spending a lot of time in the air going forward.
    k❥
  • MK_4Dani
    MK_4Dani Member Posts: 314
    #5
    Super cool!
    The thought of my daughter being able to receive a vaccine brings tears of joy!
    Good Luck Carlene!
    Mary
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #6
    Lisa13Q said:

    Wow
    That's where my mother is treated and where Nancy 591 is treated. Let me know who they assign you to. I am surprised by your choice to change. NY is a far cry from TX...Let me know what they say!

    I'm not changing doctors.
    I'm not changing doctors. This is a six month clinical trial - nothing more. I have reached a point where my own gyn/onc is prepared only to "watch and wait". While we are watching and waiting, I am going to offer myself up for this trial. The potential is HUGE. And every clinical trial starts with people like us. If no one was willing to be a lab rat, we would all be dead right about now.

    There is no assignment of doctors. This one belongs strictly to Dr Paul Sabbatini.

    Carlene
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #7
    froggy1 said:

    exciting!!!
    Wow Carlene,
    This is so exciting. What did your regular gyn/onc. think? I admire your tenacity. Keep us posted.
    Ginny

    Ginny....
    I have talked to
    Ginny....

    I have talked to my doctor's nurse, who arranged for my records to be faxed to MSK. I haven't discussed it with my doctor yet, but I will, if I see him before I go to NYC. I am not sure why he would care, but I do owe him a courtesy heads-up.

    The first appointment is just an evaluation anyway. Nothing fatal or final.

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

    This is excting
    stuff, Carlene! You may be spending a lot of time in the air going forward.
    k❥

    I don't mind. I am used to
    I don't mind. I am used to it. Airline people are weird. Some of us commute to our hairdresser's appointments. My husband commuted from DFW to Houston for several years, after Braniff went under and before he went to work for AA. We have friends who commute to Cleveland, NY, etc.

    Carlene
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #9
    Hissy_Fitz said:

    I'm not changing doctors.
    I'm not changing doctors. This is a six month clinical trial - nothing more. I have reached a point where my own gyn/onc is prepared only to "watch and wait". While we are watching and waiting, I am going to offer myself up for this trial. The potential is HUGE. And every clinical trial starts with people like us. If no one was willing to be a lab rat, we would all be dead right about now.

    There is no assignment of doctors. This one belongs strictly to Dr Paul Sabbatini.

    Carlene

    Dr. Gorgeous
    Carlene,

    Dr. Sabbatini's nickname is Dr. Gorgeous, and he is Nancy591's doctor!!! Let me know when you'll be there. Maybe our paths will cross. Unfortunately, I know the 6th floor too well, but it would be nice to see a friendly face there...
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #10
    Lisa13Q said:

    Dr. Gorgeous
    Carlene,

    Dr. Sabbatini's nickname is Dr. Gorgeous, and he is Nancy591's doctor!!! Let me know when you'll be there. Maybe our paths will cross. Unfortunately, I know the 6th floor too well, but it would be nice to see a friendly face there...

    Does he know that? I've
    Does he know that? I've seen his photo, and he is nice looking, but not really the type that makes me do a double-take.

    I will be at the facility in Manhattan - on 53rd street - they tell me. I would love it if we (you, Nancy, and I) could meet up!

    His nurse said she was saving a spot for me on the 19th, but that's totally "iffy" at this point. She'd like to get me in sooner, actually.

    I just wish it were closer to Spring time. My intolerance for cold weather is legendary among my family and close friends. I'm afraid I will freeze to death "up North".

    Carlene
  • sanam
    sanam Member Posts: 106
    #11
    MK_4Dani said:

    Super cool!
    The thought of my daughter being able to receive a vaccine brings tears of joy!
    Good Luck Carlene!
    Mary

    Wish you luck!

    Wish you luck!
  • clamryn
    clamryn Member Posts: 508
    #12
    My idol
    Carlene.... I think you are my idol. I think it is very exciting and I think you are the person to do it.

    Linda
  • Mwee
    Mwee Member Posts: 1,338
    #13
    clamryn said:

    My idol
    Carlene.... I think you are my idol. I think it is very exciting and I think you are the person to do it.

    Linda

    you're my idol also, dear heart
    I wouldn't worry too much about that "chemo brain" stuff... you're definitely on top of your game. I'm so excited about your news of MSK. It's bitter cold in NYC this time of the year, so you want to dress in layers and bring boots :).

    I remember so well when you first were talking of doing a years worth of maintainence chemo and I thought I would never be able to do that. You've completely changed my mind. I'm now hoping to get to the normal range and follow that path myself. You rock, girl!
    (((HUGS))) Maria
  • KarynH
    KarynH Member Posts: 32
    #14
    Mwee said:

    you're my idol also, dear heart
    I wouldn't worry too much about that "chemo brain" stuff... you're definitely on top of your game. I'm so excited about your news of MSK. It's bitter cold in NYC this time of the year, so you want to dress in layers and bring boots :).

    I remember so well when you first were talking of doing a years worth of maintainence chemo and I thought I would never be able to do that. You've completely changed my mind. I'm now hoping to get to the normal range and follow that path myself. You rock, girl!
    (((HUGS))) Maria

    Carlene,
    Go get fitted for that superhero cape and knock this puppy out of the park!
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #15
    Good luck Carlene
    This is exciting and brave and just amazing.. You go Girl! You are a super hero!!
  • jloe
    jloe Member Posts: 174
    #16
    Me Too!
    I am not changing doctors but I have an appointment with Dr. Sabbatini on the 21st to see if there is a clinical trial that is a good fit for me. He and my doctor know each other well. Maybe we'll all be there at time at the same time. Good luck!
  • Unknown
    Unknown
    #17
    This comment has been removed by the Moderator
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #18
    unknown said:

    This comment has been removed by the Moderator

    Go girl!
    Fair play to you, you don' t hang around!!! Good luck with your trial, the amount of trials I have looked at here for mum,and you just seem to get now where, or she was not eligible.
    God I hope this works, I don't know why but I have the greatest of faith in you to come out on top! I just gave a gut feeling.
    Go Carlene! Xx
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #19
    Smart lady
    You are a very smart girl and you know what you are doing. Good luck in your clinical trial Maybe some day because of people like you there will be a cure. Stay safe stay strong.....val
  • jloe
    jloe Member Posts: 174
    #20
    Hissy_Fitz said:

    I don't mind. I am used to
    I don't mind. I am used to it. Airline people are weird. Some of us commute to our hairdresser's appointments. My husband commuted from DFW to Houston for several years, after Braniff went under and before he went to work for AA. We have friends who commute to Cleveland, NY, etc.

    Carlene

    I am a former AA FA & my husband is retired AA pilot (JFK)
    Carlene,
    I hope we all meet up at MSK on 53rd one day (LisaQ, Nancy & the others). I wish it were under better circumstaces but I guess not. I live in NY and feel very lucky to have all of the facilities close to home. Great hospitals and doctors in TX too! BTW my UHC has maxed out at 300k and I'm in the transition of going to the APA supplemental and all of the facilities and doctors work with me in this transition. Go figure!

    Joni
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #21
    unknown said:

    This comment has been removed by the Moderator

    Here is the info, cut and
    Here is the info, cut and pasted from MSK site:

    Full Title :
    PHASE I TRIAL OF UNIMOLECULAR PENTAVALENT (GLOBO-H-GM2-STN-TF-TN) IMMUNIZATION OF PATIENTS WITH EPITHELIAL OVARIAN, FALLOPIAN TUBE, OR PERITONEAL CANCER IN FIRST REMISSION
    Purpose :
    The purpose of this study is to evaluate the safety and preliminary effectiveness of a new vaccine designed to train the immune system to recognize and fight ovarian, fallopian tube, or peritoneal cancer cells. The vaccine is being assessed in patients with these cancers who have achieved a first remission and have a high risk of cancer recurrence. Investigators will assess various doses of the vaccine.

    The vaccine in this study contains antigens or "fingerprints" that are found on many cancer cells, especially those from the ovaries, fallopian tubes, or peritoneal cavity (inside lining of the abdomen). The antigens in this vaccine are called Globo-H, GM2, sTn, TF, and Tn. They have been assessed in patients individually; this is the first time all of the antigens have been put together on a single molecule and evaluated in patients.

    The antigens are given with a material called QS-21, which may help the immune system to make more cancer-fighting cells. The group of antigens is attached to a material called keyhole limpet hemocyanin (KLH), which has been used for many years to boost the immune system in laboratory animals and in people.

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