I'm in....for better or worse

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
I had my last Taxol infusion today and a long heart-to-heart with my doctor. He strongly encouraged me to take advantage of the vaccine trial I was offered at MSK.

Getting into the MIMOSA trial is a long shot. They may not recruit new people. They may stick with the criteria that excludes anyone more than 8 weeks out of first line treatment. They may not even progress to Phase III, and even though they are un-blinding it, they could still go forward with another placebo trial and I might not even get the vaccine. They are also, he pointed out, more likely than not to be delayed beyond what they anticipate. That seems to be the rule, rather than the exception.

So I'm off the fence and back on track for the trial. I will be going back to NYC on Feb 1st and staying several days, at least. The first treatment is Feb 2nd and the next one is Feb 9th, so either one long trip or two shorter ones are in my future.

I will, of course, post while I am there. Anyone who lives or plans to be in the neighborhood, let me know. Maybe we can do lunch? Dinner? Share a phlebotomist?

Carlene

Comments

  • MK_4Dani
    MK_4Dani Member Posts: 314
    #2
    Good For You!
    I am happy to hear of your decision. You are amazing!
    Hip Hip Hooray!
    Mary
  • srwruns
    srwruns Member Posts: 343
    #3
    Dontcha just love it when a
    Dontcha just love it when a decision is finally made? I hate the anxiety during the decision making process. Best of luck, Enjoy NYC. Wish I was still there, would be wonderful to meet up with you. Susan
  • vj1
    vj1 Member Posts: 150
    #4
    srwruns said:

    Dontcha just love it when a
    Dontcha just love it when a decision is finally made? I hate the anxiety during the decision making process. Best of luck, Enjoy NYC. Wish I was still there, would be wonderful to meet up with you. Susan

    carlene
    Ok you win--the best to you for hitting it head on. You certainly have done your homework for you and all of us. THANK YOU! Prayers are with you; I know you will keep us posted.

    fondly
    Verna
  • VictoriaSF
    VictoriaSF Member Posts: 165
    #5
    everything happened for the reason
    i believe in this life everything happened for the reason and eventually for the better.
    enjoy NY and it is great to be part of it.
    i wish i can come to NY...
    love NY , my parents and many friends live there

    good luck!

    Hugs
    V
  • froggy1
    froggy1 Member Posts: 205
    #6
    Congrats!
    Hi Carlene,
    Congratulations on finishing your maintenance and on joining the clinical trial. I'm sure you are happy the decision is made. Thank you also for sharing and continuing to share your experience with all of us. It is so helpful to see the different options out there. I only wish these trials were easier to get into. It is certainly challenging just to work the logistics of it all! You have done a great job.

    Ginny
  • kayandok
    kayandok Member Posts: 1,202 Member
    #7
    Whoo Hooo!
    A whole new chapter to write, Carlene. I know you will enjoy all the excitement sourrounding this adventure. I will be looking forward to reading your stories. Wishing you the best!
    kathleen
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #8
    The 10 day forecast says
    The 10 day forecast says that the low will be NINE DEGREES in NYC on Feb 1st. NINE DEGREES???? Are you kidding me???

    When does Spring come? Where do the kids hide Easter eggs....in the snow drifts? If they get a bike for Christmas, how long before they get to ride it?

    Nine degrees.....Lord love a duck.

    Carlene
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #9
    Hissy_Fitz said:

    The 10 day forecast says
    The 10 day forecast says that the low will be NINE DEGREES in NYC on Feb 1st. NINE DEGREES???? Are you kidding me???

    When does Spring come? Where do the kids hide Easter eggs....in the snow drifts? If they get a bike for Christmas, how long before they get to ride it?

    Nine degrees.....Lord love a duck.

    Carlene

    Glad you made your mind up.
    Glad you made your mind up. Reading the above post I now think you have made not only a good choice but the right choice. I am also a firm believer that things happen for a reason! Good luck with it, I wish they did more trials like this in the uk , America seems to pioneer any new treatment options. I did look on controlled trials for this trial but it is all in the states.
    Liz.
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #10
    you are in
    glad to hear you made your decision and you are on your way for a very important trial. Best of luck and safe travels. Keep us posted....val
  • pattysoo
    pattysoo Member Posts: 170
    #11
    trial
    Sounds like your doctor gave you excellent advice. Pack your long underwear, wool socks and mittens. It's going to be so cold!
    I believe kids get sleds for Christmas - at least they did when I was a kid. Bikes come for birthdays.
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #12
    Hi
    HI Carlene. I'm glad you are going full speed ahead with this.. I didn't want to chime in originally, not really knowing anything about clinical trials etc. but I think this sounds very promising and you're in, you've qualified, got all the paperwork done.. a bird in the hand and all that... Good luck and dress warm. I am over here in Ohio and believe me it's not much warmer... though we are at a balmy 28 or so today... shorts and t shirt weather for us.
  • kikz
    kikz Member Posts: 1,345 Member
    #13
    Cindy Bear said:

    Hi
    HI Carlene. I'm glad you are going full speed ahead with this.. I didn't want to chime in originally, not really knowing anything about clinical trials etc. but I think this sounds very promising and you're in, you've qualified, got all the paperwork done.. a bird in the hand and all that... Good luck and dress warm. I am over here in Ohio and believe me it's not much warmer... though we are at a balmy 28 or so today... shorts and t shirt weather for us.

    Thank you
    for having the courage to enter the trial and brave the elements. Seeing New York was a life-long dream of mine. I went when I was 30 (many moons ago). It was July, hot and muggy; so the opposite of what your facing. I wish you the best.

    Karen
  • anicca
    anicca Member Posts: 334 Member
    #14
    Hissy_Fitz said:

    The 10 day forecast says
    The 10 day forecast says that the low will be NINE DEGREES in NYC on Feb 1st. NINE DEGREES???? Are you kidding me???

    When does Spring come? Where do the kids hide Easter eggs....in the snow drifts? If they get a bike for Christmas, how long before they get to ride it?

    Nine degrees.....Lord love a duck.

    Carlene

    Some things to pack
    Hi Carlene, congratulations on going for it!

    I just read your personal info and saw that you live in Dallas/Ft.Worth. I lived in Ft. Worth from 4th grade through high school, then moved to NY for college and stayed. We really are having a brutal winter this year. If you can find SmartWool socks, get several pair to bring with you. Also, tall snow/slush boots. Kamik is a reasonably priced brand that are warm and waterproof. A hat that covers your ears is also a good idea, or a warm scarf you can wrap over your head. Do you think you and your husband will have time to see the city? If you do, and if you have the energy, I can get into quite few museums for free, and bring guests also. I would love to do that with you, or anything else you would like to do in NY. I work part time, mostly weekends, so it's no problem for me and would be fun, I think. I sent you a private message with my contact info.

    Dinah
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #15
    anicca said:

    Some things to pack
    Hi Carlene, congratulations on going for it!

    I just read your personal info and saw that you live in Dallas/Ft.Worth. I lived in Ft. Worth from 4th grade through high school, then moved to NY for college and stayed. We really are having a brutal winter this year. If you can find SmartWool socks, get several pair to bring with you. Also, tall snow/slush boots. Kamik is a reasonably priced brand that are warm and waterproof. A hat that covers your ears is also a good idea, or a warm scarf you can wrap over your head. Do you think you and your husband will have time to see the city? If you do, and if you have the energy, I can get into quite few museums for free, and bring guests also. I would love to do that with you, or anything else you would like to do in NY. I work part time, mostly weekends, so it's no problem for me and would be fun, I think. I sent you a private message with my contact info.

    Dinah

    Dinah...
    I have reservations
    Dinah...

    I have reservations at the Marriot Courtyard in the same building as the MSK Cancer Center in Manhattan - on 53rd St. I saw on CNN that NYC got 37 inches of snow in January, so far. The most they have ever had. Wow! It was 65 degrees here today and that was a bit chilly for my taste....LOL. My intolerance for cold weather is legendary.

    I borrowed snow boots from my son's girlfriend. Ugly, but they look very functional. I have a wool coat with a hood. And I bought ear muffs.

    This trip we will arrive on Feb 1st and leave on the 4th. I just have blood work on the 1st and a short appointment on the 2nd. The rest of the time is ours, to do as we please. I'd love to get together!

    Carlene
  • jloe
    jloe Member Posts: 174
    #16
    I'm here all the time
    Please contact me when you have some free time while you're here. I work full-time but can fit in time later in the afternoon.
  • anicca
    anicca Member Posts: 334 Member
    #17
    Hissy_Fitz said:

    Dinah...
    I have reservations
    Dinah...

    I have reservations at the Marriot Courtyard in the same building as the MSK Cancer Center in Manhattan - on 53rd St. I saw on CNN that NYC got 37 inches of snow in January, so far. The most they have ever had. Wow! It was 65 degrees here today and that was a bit chilly for my taste....LOL. My intolerance for cold weather is legendary.

    I borrowed snow boots from my son's girlfriend. Ugly, but they look very functional. I have a wool coat with a hood. And I bought ear muffs.

    This trip we will arrive on Feb 1st and leave on the 4th. I just have blood work on the 1st and a short appointment on the 2nd. The rest of the time is ours, to do as we please. I'd love to get together!

    Carlene

    Thursday?
    Carlene,

    It's fortunate the Marriot is so convenient for you and that you can stay there! I'll admit it's a lot better than the "B&B" I offered in Brooklyn :)

    Thursday, the 3rd would work well for me. I'm up for whatever you are, be it coffee, lunch, or a trip to MOMA (Museum Of Modern ART, free admission courtesy of my former employer,) which is just 5 or 6 blocks from the Marriot. If you have the energy for something else that appeals to you, let me know. I would rather do earlier in the day than later, only because I have to be back for a 6:30 lesson, and hate rush hour!

    Dinah
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #18
    decision
    Sounds like a sound decision. I will be in NYC at least twice in March. If you know when/if you will be there in March let me know and I will schedule my visit around your visit.

    Best of luck
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #19
    nancy591 said:

    decision
    Sounds like a sound decision. I will be in NYC at least twice in March. If you know when/if you will be there in March let me know and I will schedule my visit around your visit.

    Best of luck

    Nancy....the schedule they
    Nancy....the schedule they gave me says I only have one visit in March, and that's the 16th. I would LOVE to meet up! Let me know if the 16th works for you!

    Carlene
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #20
    Hissy_Fitz said:

    Nancy....the schedule they
    Nancy....the schedule they gave me says I only have one visit in March, and that's the 16th. I would LOVE to meet up! Let me know if the 16th works for you!

    Carlene

    visit
    As of right now my surgeon visit is Tues the 15th. Hopefully she is there on Wed the 16th as well. I will call Monday morning!

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