not having a good day

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tammy41
tammy41 Member Posts: 48
edited March 2014 in Colorectal Cancer #1
been in a study called vectibix also known as panitumumab have been on it for 5 months and ct scan results today showed more spots in lung. the liver is still stable no growth there. doctor wants me to start another study in 2 weeks it is phase 1 study of brivanib and capecitabine both oral. the worst part of all this is telling my children they are 25 20 and 10. i feel i have been pretty strong dealing with all of this but i just want to fall apart right now... my dr wont even talk to me about the syber knife when i bring it up he says i cant do it because i have it in 2 location do you no if this is true? i have had surgery on the liver and folfox and avastin. then cpt11 and erbatux. then the one study. and he seems to think i am running out of options...just needed to vent thanks tammy

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  • johnsfo
    johnsfo Member Posts: 47
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    venting is good
    Dear Tammy,

    Glad you're venting. I used to apologize for complaining or for just talking about feeling bad some days. That's all part of the experience, though, isn't it? And not talking about it denies the wholeness of you feelings. So I say, let the bad days have their expression just as you do the good ones.

    About cyberknife. I've had cyberknife treatments to my sacrum. The cancer there is/was very extensive, and one radiation onc said it was too large to treat. Another said he had experience with such a large mass and would do it. Since having the treatments in late September, the pain associated with the tumor has decreased, as has my CEA (from 60 to 12).

    That's not exactly the same as two locations in the lung, but it shows that a second opinion can sometimes offer new options. I suggest talking to another rad onc.

    John
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
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    Hi dear tammy,I am really
    Hi dear tammy,I am really sorry to know that you are not having a good day.I know peterhw is taking a clinical trial.He has mets both in his liver and lung.Here is the disscussion link several days ago he posted:http://csn.cancer.org/node/178546,hopefully this is going to be helpful to you.There is always options and hope,never and ever give up.Take care.I also would like to give you a warm hug,hope you feel better now.
  • heatherstar70
    heatherstar70 Member Posts: 39
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    Hi dear tammy,I am really
    Hi dear tammy,I am really sorry to know that you are not having a good day.I know peterhw is taking a clinical trial.He has mets both in his liver and lung.Here is the disscussion link several days ago he posted:http://csn.cancer.org/node/178546,hopefully this is going to be helpful to you.There is always options and hope,never and ever give up.Take care.I also would like to give you a warm hug,hope you feel better now.

    tammy
    i dont know about cyberknife but i did want to tell you that i will be thinking of you today. and never loose hope there is always someone out there with another opinion..

    sending you hugs
    Heather
  • nudgie
    nudgie Member Posts: 1,478 Member
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    Get as many
    opinions as you can from as many doctors as you want. There are doctors that say abreast of all treatments, new, old and innovated and then there are others who remain in their own little world.

    Find one that works best for you and your tumor.
  • Trapbear
    Trapbear Member Posts: 108 Member
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    Hi Tammy,
    I am sorry to hear

    Hi Tammy,
    I am sorry to hear that you are having a bad day. My husband's case sounds a little like yours. No liver mets, but several small mets in the lungs. Our oncologist also did not want to do cyberknife because the nodules were spread all over the lung. She also thought that there could be side effect from the treatment in the lung. It is more commonly used in the liver, other solid organs. We are seeing another oncologist for a second, or even third, opinion. This disease really sucks, take care, you will be in my prayers,
    Bill
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Sorry
    I'm hoping that this new treatment might work very well for you and that you can get the surgery you need. You have every right to vent, you are going through a lot of stress, emotion, and treatments. Good luck.

    Kim
  • tammy41
    tammy41 Member Posts: 48
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    Sorry
    I'm hoping that this new treatment might work very well for you and that you can get the surgery you need. You have every right to vent, you are going through a lot of stress, emotion, and treatments. Good luck.

    Kim

    thank you everyone my day
    thank you everyone my day turned out ok my older children did very well when i told them.(better then i did) and i decided not to tell my 10 year old everything just that i was going to change my meds. i took her to dance and thats when i lost it i went outside and had a good cry and asked my higherpower if it was to much to ask for just to watch this little girl grow up.i dont think im asking to much. i think i will try this new study and if after the first scan things have not changed i will find a new hospital and get a second opion i will not wait as long as i did this time. thank you for all the kind words and hugs take care tammy
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    tammy41 said:

    thank you everyone my day
    thank you everyone my day turned out ok my older children did very well when i told them.(better then i did) and i decided not to tell my 10 year old everything just that i was going to change my meds. i took her to dance and thats when i lost it i went outside and had a good cry and asked my higherpower if it was to much to ask for just to watch this little girl grow up.i dont think im asking to much. i think i will try this new study and if after the first scan things have not changed i will find a new hospital and get a second opion i will not wait as long as i did this time. thank you for all the kind words and hugs take care tammy

    Tammy..I asked Him the same question.....
    and so far so good..... keep the chin up girl and you never run out of options...you have a phone, car, and church, so the options never end.....Use them all......{{{hugs}}} Clift
  • peterhw
    peterhw Member Posts: 69
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    Tammy
    Vectibix is basically the same as Erbitux. They are anti EGFR drugs. They only work with KRAS wild type. I understand you have already tried Erbitux. So it is no surprise you don't see good result from Vectibix. They are basically the same thing. Hope you have better luck with Brivanib and Capecitabine.


    Peter
  • luv3jay
    luv3jay Member Posts: 533 Member
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    Tammy, I'm so sorry to hear
    Tammy, I'm so sorry to hear about your latest results! It can be really frightening but please don't give up hope. Keep pressing for answers and get a different opinion about treatment. I'm praying for you.

    -Sheri