NO REVERSAL FOR ME

jerseysue
jerseysue Member Posts: 624 Member
edited March 2014 in Colorectal Cancer #1
I had my reversal scheduled for this Thursday. I called the onc today and left a message that it was scheduled. He called me back and told my husband that because I'm taking Avastin that if I stop I can't start again. I guess I'm on some type of trial. So it looks like another year of pooping in my bag. It was just an all around "crappy" day I lost money at the casino too (that's where I was when he called). Oh well what's a year!

Comments

  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #2
    Hi Sue . I'm sorry , I know how dissapointed you are. As you said, it must have something to do with the trial you are on then, because I know there are others who have been off Avastin for a while and gone back on it after a break. Look at it as a small detour in the road, but you'll get back on the path. Good Luck and God Bless .

    P.S.Hope you turn 777 next time at the casino!
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #3
    hopefulone said:

    Hi Sue . I'm sorry , I know how dissapointed you are. As you said, it must have something to do with the trial you are on then, because I know there are others who have been off Avastin for a while and gone back on it after a break. Look at it as a small detour in the road, but you'll get back on the path. Good Luck and God Bless .

    P.S.Hope you turn 777 next time at the casino!

    Sorry to hear that Sue, knowing that you had your heart set on getting back to some normality. Jen and I hope that sometime in the near future it will be an option for you. In the meantime we know that this news will not get you down....your wonderfull cheerfull nature will prevail!
    Ross and Jen
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #4
    We'll find a casino in Nashville and get your money back....

    On the "up" side....better safe than sorry. When you do get your reversal, it will be better than rushing into something and then regretting it later.

    See you in September!

    Stacy
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    Hummmmm, maybe you should try "Craps".....*hangs head...sorry*

    It's better to wait, dearheart, if you can't get back to Avastin and it's something the doctor wants. You are a wonderful, upbeat gal....a year can go by before you know it!!!

    Don't forget....you are NED!!!!!! THAT makes everyday a winning day!!!!

    Hugs, Kathi
  • Kanort
    Kanort Member Posts: 1,272 Member
    #6
    I am so sorry, Sue, that your plans had to be postponed for a year. I know how dissappointed you must be, but I'm sure it is the best plan for your overall healing.

    See you in Nashville.

    Hugs,

    Kay
  • betina61
    betina61 Member Posts: 642 Member
    #7
    Sorry, that you have to postpone the reversal, but you know that the most important thing is that you are NED, a year goes by pretty fast, go on and celebrate lilfe.
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #8
    Hi Sue -

    I am sorry about this, but I am wondering about the following:

    You may be on some kind of trial involving Avastin and it may well be that the terms of that TRIAL say that once you stop Avastin, you are eliminated from that TRIAL.

    But, Avastin is definitely an approved drug for Stage IV CRC. Once a drug is approved an MD can use it in any way they see fit, whether or not the usage / indication is approved.

    SO, have you talked to your oncologist about dropping out of the Trial, going off Avastin a few weeks, having the surgery, healing and then having your oncologist put you back on Avastin. It may not be the trial, but it may be exactly the same thing as the trial, except for the pre/post surgery break.

    Wishing you the best,
    Betsy
  • jerseysue
    jerseysue Member Posts: 624 Member
    #9
    Betsydoglover said:

    Hi Sue -

    I am sorry about this, but I am wondering about the following:

    You may be on some kind of trial involving Avastin and it may well be that the terms of that TRIAL say that once you stop Avastin, you are eliminated from that TRIAL.

    But, Avastin is definitely an approved drug for Stage IV CRC. Once a drug is approved an MD can use it in any way they see fit, whether or not the usage / indication is approved.

    SO, have you talked to your oncologist about dropping out of the Trial, going off Avastin a few weeks, having the surgery, healing and then having your oncologist put you back on Avastin. It may not be the trial, but it may be exactly the same thing as the trial, except for the pre/post surgery break.

    Wishing you the best,
    Betsy

    I spoke with him and he isn't calling it a trail but a protocol. He said that I would have to wait a few months after taking Avastin before any surgery. He just wants to make sure that I'm "stable". I'm already ok with the fact that another year of pouches is ahead of me. I was really just hoping for the "normal" back in my life.
  • spongebob
    spongebob Member Posts: 2,565 Member
    #10
    Sue -

    try to look on the bright side of all of this... If you decide to kidnap a woman who you think may be a rival for your lover's affection, you can drive cross country without having to find astronaut diapers...

    You're right, darlin'- what's one more year? You'll get that reversal!

    - SB
  • scouty
    scouty Member Posts: 1,965 Member
    #11
    I am sorry for your disappointment Sue.

    But I have to say I am not surprised with your onc's recommendations about surgery after Avastin. It makes you a free bleeder and I was told I could not shave my legs with anything other then an electric razor or floss my teeth while I was on it. I also had to carry a card with me at all times in case I had to go to the emergency room to warn them of the bleeding risk. That was 3 years ago and it could have changed since then but I do think you have to be careful of the risks of some of the drugs.

    I really hope Stacy finds a casino in Nashville, I lost money in Halifax and would like to get it back too. I think you would be a hoot to hang out at the casino with. Kanort won big bucks in Halifax, we'll make her buy.

    Sponger, she would still have to pee.....sorry, girls just don't have the same "conveniences" of pee peeing that men do.

    Sue, I commend and love that you are NED and so hope it last forever my friend.

    Hugs, kisses and see you in Nastyville!!!!!!

    Lisa P.
  • spongebob
    spongebob Member Posts: 2,565 Member
    #12
    scouty said:

    I am sorry for your disappointment Sue.

    But I have to say I am not surprised with your onc's recommendations about surgery after Avastin. It makes you a free bleeder and I was told I could not shave my legs with anything other then an electric razor or floss my teeth while I was on it. I also had to carry a card with me at all times in case I had to go to the emergency room to warn them of the bleeding risk. That was 3 years ago and it could have changed since then but I do think you have to be careful of the risks of some of the drugs.

    I really hope Stacy finds a casino in Nashville, I lost money in Halifax and would like to get it back too. I think you would be a hoot to hang out at the casino with. Kanort won big bucks in Halifax, we'll make her buy.

    Sponger, she would still have to pee.....sorry, girls just don't have the same "conveniences" of pee peeing that men do.

    Sue, I commend and love that you are NED and so hope it last forever my friend.

    Hugs, kisses and see you in Nastyville!!!!!!

    Lisa P.

    OK... sorry to give false hope, Sue... I guess you'll still have to locate some astronaut diapers. Maybe on e-Bay? What a fashion statement you'll make! And hey, if you find you're on a winning streak at a casino in Nashville - you won't have to excuse yourself right on the middle of all the excitement! And WHEN you win (not if) you won't have to worry if you get a little too excited - ya know what I mean?

    (there, Scouty! Try to steal my thunder, will you?)

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