MSKK and the holy grail (vaccine for OC)

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Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
We just got home....boy, was that a day to remember, and NOT in a good way! We left our house about 4:30 to catch a 6:10. The flight itself was uneventful and getting to SK's Cancer Center on E 53rd was as easy as walking out of the terminal and into the line at a taxi stand. We did get ripped off by a cab driver. I am convinced of it. The fare was supposed to be $25.00, and the meter read less, actually. There was a credit card swiper thing in the back seat and my husband stated he was going to pay via credit card, but the driver said, "There is a tax if you use credit card. Can you pay cash?" So I gave the cabbie two twenty dollar bills and asked him to give me back ten. He pushed a button on the meter and it jumped from $24 to $29 and he said, "The fare is thirty dollars by itself." The return fare was $20 - no "button pushing" and nothing said about a tax on credit card payments.

Check in is very efficient at MSKCC. But the wait to see Dr Sabbatini and his staff was horrendous. I was taken back to an exam room around 3:00; my appointment was for 1:00. It is a beautiful facility. And they have a station with soft drinks, coffee, tea and snacks - all free.

I saw the legendary Dr S, as well as two other (female) doctors. They had all read my chart very thoroughly. That much was apparent. Dr Sabbatini is from Mississippi and totally down-to-earth. He seems to have zero ego. And he is a serious contender for Patrick Dempsey's title: Dr McDreamy.

Long story...well, long, I was accepted into the study. They actually seemed excited to get me. I'm thinking that might be because (1) I was hard-core - lots of cancer and a super high CA125 that plummeted into the teens after the 4th treatment. (2) I have been NED for almost a year, and (3) I have tolerated chemo very, very well.

I go back Feb 1st for more blood work and start treatment on the 2nd. I have a schedule, but the gist of it is that I get treatments on Feb 2 and 9th, and the 16th. I get a 4 week break, then go back for one injection in March, blood work in April and May and the final treatment on June 8th. I will have 3 CT scans - April, July, and Oct. They will also call me on the phone periodically, to discuss my general health, etc. Of course, if I have a recurrence, I am out of the trial.

I was surprised to learn that there is a Phase II trial of an almost identical vaccine, being given all over the country, for women in their second remission. I plan to do some research and see what I can find out about the results of that Phase I.

Nancy, he didn't really take a hard stand for or against Taxol maintenance. He said that I had undergone "a lot of chemotherapy - more than most people." And he mentioned that my doctor's notes said I had embraced the offer of Taxol maintenance "with great enthusiasm", and I told him that was correct. He pointed out that I could have declined, as many patients do, and it would have been "perfectly understandable." I told him that, on the contrary, I was sitting in front of him that very minute because the idea of "watchful waiting" does not appeal to me. And he said that the fact that I had tolerated it so well made the decision much easier, a statement I concurred with. I got the impression that he's not against it, per say, but it's not the latest tool in the cancer toolbox and I think he is really on the cutting-edge of things, and has moved past those earlier options. My own doctor told me that I am the last of his patients to get Taxol maintenance. He is using other maintenance drugs now, inclding Avastin (when he can get the insurance companies to pay for it.)

Dr S has a NP named Sandra and I am supposed to email or call her with any questions, and after the trial starts, he wants me to send her frequent up-dates via email, just to let them know how I am feeling, etc. Because there are a couple of long periods in the schedule where they don't see me for weeks at a time.

The formal name of the trial is:
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.

The vaccine contains an antigen that will, hopefully, identify ovarian cancer cells and help my immune system recognize and destroy them.

Carlene
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Comments

  • zinaida
    zinaida Member Posts: 221
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    Thanks, Carlene! You are
    Thanks, Carlene! You are brave woman. Good luck with your trial-treatment. Hugs, Zina.
  • kayandok
    kayandok Member Posts: 1,202 Member
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    Thanks
    for the update, Carlene, and congratulations on getting into the trial! Will be looking forward to seeing how this goes.
    kathleen
  • nancy591
    nancy591 Member Posts: 1,027 Member
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    In/Out
    In and Out of the state in one day IS impressive!! Whew I'm exhausted reading about it! There is always a wait. Not usually quite that bad. As you can see, he takes his time. I never feel rushed when I see him. My very first visit with him was a VERY long wait too. I remember being totally ticked about it.

    I remember when I started my treatment he told me once I get into remission there will be a trial for me. When I was done the trial was already closed. I would have jumped on the wagon for any maintenance program. I tolerated chemo VERY well also. Never a delay due to blood work, etc.

    I knew there was a onging trial for women in their 2nd and 3rd remission. I posted the link on here at the same time I posted this one. I hope I will make it there!!! If/when I do get there I hope the trial will still be open. I scour the site every couple of months to see what is open.

    Sandra is SUPER, SUPER nice. I wish you much success!!!
  • LPack
    LPack Member Posts: 645
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    Sounds Good
    Carlene,

    Sounds good for you.

    When I met my somewhat famous Dr. Copeland the very first time my wait was long very long too. He is very thorough and sometimes I just think they schedule too many of us women in a day.

    I know "we" wait everytime to see him. But after my exam each time, he meets my husband and me in his office and we go over the exam, any tests that have been taken since last visit and questions and updates about the trial.

    Thanks for the update.

    Libby ☺
  • Mwee
    Mwee Member Posts: 1,338
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    Whew
    You must be exhausted, but I thank you for being a part of this. The mere thought of a vaccine makes my heart soar for all our daughters/grand daughters/sisters/mothers. Those Big Girl Panties look very well on you my dear!
    ((((HUGS)))) Maria
  • survivingovca
    survivingovca Member Posts: 23
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    I remember reading about
    I remember reading about this trial. It sounds promising!

    I loved being part of a clinical trial. The care is exceptional, and they closely monitor your progress.

    Good luck!
  • jloe
    jloe Member Posts: 174
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    I remember reading about
    I remember reading about this trial. It sounds promising!

    I loved being part of a clinical trial. The care is exceptional, and they closely monitor your progress.

    Good luck!

    Great news!
    Glad the weather was working for you. Best of luck with the trial.
  • kikz
    kikz Member Posts: 1,345 Member
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    jloe said:

    Great news!
    Glad the weather was working for you. Best of luck with the trial.

    HIgh hopes
    Thank you, Carlene. I feel you are our Christopher Columbus.

    Karen
  • upsofloating
    upsofloating Member Posts: 466 Member
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    Wow Carlene, you had quite
    Wow Carlene, you had quite an adventure. Congrats on making it through!

    It is wonderful that you are making this effort to participate in the trial. I have read of another cancer type that has developed a vaccine for treatment. And you are contributing to making this happen for these gyn cancers. You are directly contributing to potential development of a entirely new course of treatment! Way to go!
    Annie
  • clamryn
    clamryn Member Posts: 508
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    Proud of you
    Carlene, I am so proud of you. I love reading about your trip. You are a trooper. I cannot imagine me in NY. I am from MO and I am sure I would be totally lost. Continue with the updates. I am very interested in how you are doing with it. I wish I was right there with you.

    Linda
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
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    Glad your back and in the trial process
    Good luck to you. you give us all hope. Do you have to travel to nyc again? Did you get to have a nice dinner or shopping spree? I hope so/////val
  • srwruns
    srwruns Member Posts: 343
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    Awesome trip report (as I
    Awesome trip report (as I climber on the climbing blogs we post "TRs", or trip reports...they are the most fun to read) You may have gotten ripped off by the cabbie, but actually the amount doesn't sound too bad for a NYC cab fare.
  • This comment has been removed by the Moderator
  • anicca
    anicca Member Posts: 334 Member
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    Thank you!
    Thank you for such a complete and detailed report. I wouldn't be surprised if one of the reasons they want you in the trial is that you are intelligent and articulate. I love this approach, and hope you are one who helps to show it works.

    I'm glad your travel plans worked so smoothly! I agree that you may not have been ripped off by the cabbie, though he certainly made it seem that way. I've lived in NYC for over 40 years, and at this time, any fare to or from any NYC airport that is under $30 is a bargain. It sounds like you flew to and from LaGuardia. JFK and Newark would have been even more.
  • vj1
    vj1 Member Posts: 150
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    anicca said:

    Thank you!
    Thank you for such a complete and detailed report. I wouldn't be surprised if one of the reasons they want you in the trial is that you are intelligent and articulate. I love this approach, and hope you are one who helps to show it works.

    I'm glad your travel plans worked so smoothly! I agree that you may not have been ripped off by the cabbie, though he certainly made it seem that way. I've lived in NYC for over 40 years, and at this time, any fare to or from any NYC airport that is under $30 is a bargain. It sounds like you flew to and from LaGuardia. JFK and Newark would have been even more.

    Great!
    Carlene:
    Thanks for the thorough update. Glad all went well and you are in the trial. Best to you; will look forward to your posts.

    Verna
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
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    anicca said:

    Thank you!
    Thank you for such a complete and detailed report. I wouldn't be surprised if one of the reasons they want you in the trial is that you are intelligent and articulate. I love this approach, and hope you are one who helps to show it works.

    I'm glad your travel plans worked so smoothly! I agree that you may not have been ripped off by the cabbie, though he certainly made it seem that way. I've lived in NYC for over 40 years, and at this time, any fare to or from any NYC airport that is under $30 is a bargain. It sounds like you flew to and from LaGuardia. JFK and Newark would have been even more.

    Yep...LaGuardia. The cab
    Yep...LaGuardia. The cab ride from JFK is $55 one way, according to the 'net.

    The younger, female doctor (forgot her name....Dr Owens???), anyway, she asked me if I worked in the medical field. I told her I just had a lot of time on my hands, 4 computers, and I'm nosy by nature.

    Is there really a tax levied against the customer if you pay with a credit card?

    Carlene
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
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    Glad your back and in the trial process
    Good luck to you. you give us all hope. Do you have to travel to nyc again? Did you get to have a nice dinner or shopping spree? I hope so/////val

    No dinner, no shows, no
    No dinner, no shows, no shopping :(

    We went up and back the same day, but on subsequent visits - approximately 6 more - we will get to do those things, although I really don't like shopping. I'm thinking more along the lines of Times Square and Rockefeller Center....and the MoMA.

    Somebody give me some restaurant suggestions for the neighborhood - E 53rd and Lexington. Just small, local places that serve portions that aren't huge, with prices that won't break the bank. My husband and I both love a bowl of hot soup in the Winter.

    Carlene
  • VictoriaSF
    VictoriaSF Member Posts: 165
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    Yep...LaGuardia. The cab
    Yep...LaGuardia. The cab ride from JFK is $55 one way, according to the 'net.

    The younger, female doctor (forgot her name....Dr Owens???), anyway, she asked me if I worked in the medical field. I told her I just had a lot of time on my hands, 4 computers, and I'm nosy by nature.

    Is there really a tax levied against the customer if you pay with a credit card?

    Carlene

    NY
    hi Carlene
    what you're doing is amazing.
    so encouraging.
    as for NY suggestions
    i used to live in NY in the 90th but when when our son was born , we have opened our first business with friend in SF and moved out of NY,
    so many years after i miss NY a lot. My parents live in brooklyn so - i am lucky to have reason to go at least once or twice a year.
    i lived on 54th and 6th and my work was on 53td and 3rd. i knew many places, some of them out of business. One place - i know for sure still there.
    it calls Russian Samovar , it is on 52nd and i think 6th.
    they have authentic russian/ukrainian food ( not sure if you like it)
    i went there last time i was in NY in july with my criatian and columbian friend and we're all enjoyed it. most of the days they have live music - gypsy, russian folk, etc..
    prices are reasonable.
    as for shopping - i personally like soho and greenwich village,
    but of course shop midtown too.
    hugs
    v
  • VictoriaSF
    VictoriaSF Member Posts: 165
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    NY
    hi Carlene
    what you're doing is amazing.
    so encouraging.
    as for NY suggestions
    i used to live in NY in the 90th but when when our son was born , we have opened our first business with friend in SF and moved out of NY,
    so many years after i miss NY a lot. My parents live in brooklyn so - i am lucky to have reason to go at least once or twice a year.
    i lived on 54th and 6th and my work was on 53td and 3rd. i knew many places, some of them out of business. One place - i know for sure still there.
    it calls Russian Samovar , it is on 52nd and i think 6th.
    they have authentic russian/ukrainian food ( not sure if you like it)
    i went there last time i was in NY in july with my criatian and columbian friend and we're all enjoyed it. most of the days they have live music - gypsy, russian folk, etc..
    prices are reasonable.
    as for shopping - i personally like soho and greenwich village,
    but of course shop midtown too.
    hugs
    v

    forgot the link
    http://maps.google.com/maps/place?hl=en&rlz=&um=1&ie=UTF-8&q=russian+samovar&fb=1&gl=us&hq=russian+samovar&cid=5007886926407707077
  • pattysoo
    pattysoo Member Posts: 170
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    NY visit
    Congratulations on being accepted into this trial. After all the effort to get there it must be gratifying to have been accepted. And you missed the big storm that's moving in there today. I love the fact that you are so thorough in your descriptions to us. It's very helpful. Thanks.