Why oh why?????

marines911
marines911 Member Posts: 68
edited March 2014 in Breast Cancer #1
My wife just got the PET scan results from the ONC and it is not good, matter of fact it is BAD. The Ixempra and CARBO are not having any effect. However, the ONC stated that my wife does not look any worse from 9 weeks ago and since she has not been hospitalized and does not display any signs on the outer appearance that is a GOOD thing. We are going to UCLA to see if she can get into a phase one clinical trial, unfortunately with the now 4 failed lines of treatment that is pretty much all we have. I really hate this TNBC and I try to remain positive for the family sake, but I get so ANGRY and just don't understand how just a few weeks ago the tumor marker went down and how earlier in the year how she could have mixed results, I mean her liver had a decrease of 50% from lesion, but had new growth on the end; HOW??????

I really appreicate any and all prayers, comments and support.

Thank you all for taking the time to read this.

Update! UCLA has a phase 2 clinical trial TK1258 in FGFR1. This drug is designed to block the growth of certain cancer cells. This drug is known as tyrosine kinase receptor inhibitors. We are hoping that when they test the tumor it has the protein that would allow her to participate in this trial and that the 4 failed lines of treatment will not be a disqualifier. In the event that she does not get accepted, then we are going to try something NAVELBEAN. Will know more next week after the results of the test and whether or not she gets in at UCLA.

Thanks again for all the love and support and prayers.

Thomas
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Comments

  • cahjah75
    cahjah75 Member Posts: 2,631
    #2
    You are both
    in my prayers. This is definitely adding stress but you do what you can. My heart goes out to both of you as you seek treatment and answers......
    {{hugs}} Char
  • sparkle1
    sparkle1 Member Posts: 242
    #3
    Ditto. I will keep your
    Ditto. I will keep your family in my prayers. Sorry you have to go through this pain. Take comfort in your love for each other and your family. God Bless!
    Sparkle.
  • mwallace1325
    mwallace1325 Member Posts: 806
    #4
    I'm so sorry
    I'm so sorry the news is not what you wanted to hear. Hopefully UCLA will have the treatment you need. You are both in our prayers and thoughts. Come back and keep us posted and to vent or anytime we can help.

    marge
  • Marcia527
    Marcia527 Member Posts: 2,729
    #5
    I don't know. I don't have
    I don't know. I don't have answers but do the doctors you are seeing have answers? I hope she can get into the trial and it helps.
  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #6
    Sorry to hear the news.
    Sending positive thoughts & prayers to you, your wife, and entire family.
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #7
    Jean 0609 said:

    Sorry to hear the news.
    Sending positive thoughts & prayers to you, your wife, and entire family.

    I'm sending thoughts and
    I'm sending thoughts and prayers also to you and your family. Hang in there and God Bless.
    Hugs,
    Wanda
    We're here for you.
  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    #8
    Sending prayers and positive
    Sending prayers and positive thoughts your way. We are here if you need to talk or vent what ever you need. God bless you both and your family. Take care Kay, Please keep us posted.
  • Betsy13
    Betsy13 Member Posts: 185
    #9
    I'm so sorry.
    My heart goes out to you and your family. I will pray for you and yours.

    Peace to your soul,
    Betsy
  • fauxma
    fauxma Member Posts: 3,577 Member
    #10
    Betsy13 said:

    I'm so sorry.
    My heart goes out to you and your family. I will pray for you and yours.

    Peace to your soul,
    Betsy

    So sorry for the bad news.
    So sorry for the bad news. Hoping UCLA will have something to offer. My prayers will be for your wife and you.
    Stef
  • aisling8
    aisling8 Member Posts: 1,627 Member
    #11
    fauxma said:

    So sorry for the bad news.
    So sorry for the bad news. Hoping UCLA will have something to offer. My prayers will be for your wife and you.
    Stef

    Sending good thoughts
    to you and your family.

    xo
    Victoria
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #12
    Praying that you find that
    Praying that you find that clinical trial at UCLA that helps your wife. There are so many "hows" and "whys" to breast cancer that remain unsnawered...how i wish i had answers or advice to help you and your wife through this. One thing I am doing to help is becoming active in my local ACS chapter. I've offered to do public speaking for them, and lobby to congress if and when they send delegates from my state. And THAT I'm doing for my daughters, my mom (who was diagnosed 2 months after me), your wife, all the wonderful women on this board, and every woman who is affected, or will be affected, by breast cancer. I'm keeping you both in my thoughts & prayers and please keep us updated on your wife.
    *hugs*
    Heather
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #13
    Heatherbelle said:

    Praying that you find that
    Praying that you find that clinical trial at UCLA that helps your wife. There are so many "hows" and "whys" to breast cancer that remain unsnawered...how i wish i had answers or advice to help you and your wife through this. One thing I am doing to help is becoming active in my local ACS chapter. I've offered to do public speaking for them, and lobby to congress if and when they send delegates from my state. And THAT I'm doing for my daughters, my mom (who was diagnosed 2 months after me), your wife, all the wonderful women on this board, and every woman who is affected, or will be affected, by breast cancer. I'm keeping you both in my thoughts & prayers and please keep us updated on your wife.
    *hugs*
    Heather

    We must keep searching for
    We must keep searching for answers to this ugly ugly beast. So much progress has been made and yet there is so much more to still be made. My prayers are for you and your wife and all others on this board, and like Heather said, every woman who is effected by b/c. Please keep us posted when you go to UCLA and learn what's offered there. Do you have an appointment yet?

    Oh, feel blessed that you are going to UCLA. Try not to think "that's pretty much all we have", but "Thank God there are new cutting edge treatment options/clinical trials available and we'll be able to take part in one".

    Suzanne
  • Aortus
    Aortus Member Posts: 967
    #14
    I wish I knew
    Thomas, I don't even know what to say (and that's very rare for me). I'm very sorry that the latest plan of attack hasn't succeeded, but perhaps the folks at UCLA have something that will work. Please keep in mind that not too long ago, the treatments in use today were Phase One trials. There are a lot of BC survivors out there today whose lives were saved by a Phase One trial which might have looked like "pretty much all that was left" at the time but hit the cancer like - say - a division of angry Marines. It's my hope and prayer, and Moopy's too, that your beautiful and beloved wife joins this growing group.

    God Bless,
    Joe (and Moopy too)
  • carkris
    carkris Member Posts: 4,553 Member
    #15
    Aortus said:

    I wish I knew
    Thomas, I don't even know what to say (and that's very rare for me). I'm very sorry that the latest plan of attack hasn't succeeded, but perhaps the folks at UCLA have something that will work. Please keep in mind that not too long ago, the treatments in use today were Phase One trials. There are a lot of BC survivors out there today whose lives were saved by a Phase One trial which might have looked like "pretty much all that was left" at the time but hit the cancer like - say - a division of angry Marines. It's my hope and prayer, and Moopy's too, that your beautiful and beloved wife joins this growing group.

    God Bless,
    Joe (and Moopy too)

    I am sorry for your
    I am sorry for your dissapointing news. I am glad she is feeling ok though. Hoping she responds to the new clinical trial. Joe always has the right way of saying things, you are in my prayers and sending a huge hug.!
  • sea60
    sea60 Member Posts: 2,613
    #16
    carkris said:

    I am sorry for your
    I am sorry for your dissapointing news. I am glad she is feeling ok though. Hoping she responds to the new clinical trial. Joe always has the right way of saying things, you are in my prayers and sending a huge hug.!

    Praying for you both
    that by His Grace you choose to seek hope, faith and strength through this.

    Sylvia
  • New Flower
    New Flower Member Posts: 4,294
    #17
    carkris said:

    I am sorry for your
    I am sorry for your dissapointing news. I am glad she is feeling ok though. Hoping she responds to the new clinical trial. Joe always has the right way of saying things, you are in my prayers and sending a huge hug.!

    You both will be in my prayers
    Sorry for the bad news. I was treated at UCLA and still have been going there for 3 months check-ups. I hope they will help your wife.If you want any info, please write me PM.
    Big Hug,
    New Flower
  • iowasignterp
    iowasignterp Member Posts: 55
    #18
    wishing you the best
    I know that when I went in for a second opinion they were telling me of all the new drugs that are in the pipeline. Perhaps there will be a great drug in a phase 1 trial that will work to make things last long enough for the next new drug. often you have to fail other drug treatments to get into the newer phase trials.

    People do live much longer than their prognoses frequently. Sounds like you will fight it as much as you can and I hope that she will fight hard, too. We hear you on this board and please use this board to vent as much as you wish. you definitely have a right to be angry at this cancer. it is not fair, cancer can be a stealthy enemy.

    please keep us posted on what happens at ucla. we will all be rooting for you. if it is possible, find a getaway with the family to do something fun and spontaneous so that you have a happy memory while you are dealing with this.

    take care of yourself and your family.
  • meena1
    meena1 Member Posts: 1,003
    #19
    iowasignterp said:

    wishing you the best
    I know that when I went in for a second opinion they were telling me of all the new drugs that are in the pipeline. Perhaps there will be a great drug in a phase 1 trial that will work to make things last long enough for the next new drug. often you have to fail other drug treatments to get into the newer phase trials.

    People do live much longer than their prognoses frequently. Sounds like you will fight it as much as you can and I hope that she will fight hard, too. We hear you on this board and please use this board to vent as much as you wish. you definitely have a right to be angry at this cancer. it is not fair, cancer can be a stealthy enemy.

    please keep us posted on what happens at ucla. we will all be rooting for you. if it is possible, find a getaway with the family to do something fun and spontaneous so that you have a happy memory while you are dealing with this.

    take care of yourself and your family.

    I am so sorry to hear this
    I am so sorry to hear this news. I have a tumor in my liver and the chemo has been working, but i am changing oncologist right now, i will find out my new treatment on Tuesday. I hope they can find some treatment that works. I was in a lot of pain from the tumor. Take care
  • RE
    RE Member Posts: 4,591 Member
    #20
    I am truly sorry to hear
    I am truly sorry to hear this, I wish I had some sort of answers for you but cancer is a mystery to me as well. I so hope your wife is able to get into the clinical trail and that she does well on it. My prayers are with you and she, please keep us updated.

    RE
  • padee6339
    padee6339 Member Posts: 763
    #21
    God Bless you Both
    You will be in my thoughts and prayers. Keep strong!
    Hugs - Pat

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