starting study on the 13 th need help

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tammy41
tammy41 Member Posts: 48
edited March 2014 in Colorectal Cancer #1
i have never posted before but i have been reading and you all have been such a big help. i found out march of 07 i had colon cancer stage 4 mets to the liver. colon resection in march of 07 then in july of 07 liver resection. chemo after folfox and avastin 6 months off then cea started to go up so i went back to chemo.cpt11 and erbatux. then cea started to go up again cat scan showed 2 small spots on my lung. so i went to have my preop the day before they gave me a pet scan[first one i had] and it showed spots on my liver and the 2 spots on my lung. so back to my dr and he said he would talk to the dr at mass general and get back to me. so the dr in mass called said they wanted to talk to me about a study. me and my husband went yesterday and the first thing the dr says is so you have use up all your options and would like to look into a study. i was floored my dr never said that there was no more that he could do. so i dont no where this dr got this info from . unless he had to say that in front of the study group. any ways i picked a study called phase11 trial of panitumumabin cetuximab refractory kras wild type also call pmab i no it has erbatux.has anyone ever been in studys i am so scared what do you think of studys. there or only 35 of us dong this study.and it is being done by mass general and dana farber cancer institute

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  • taraHK
    taraHK Member Posts: 1,952 Member
    #2
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    Hi Tammy,
    I am glad you
    Hi Tammy,

    I am glad you posted -- welcome to this board although it sounds like you are already a well-read member!

    First of all, I am so sorry the doctor made that comment about "you have used up all your options". Not a nice thing to say, especially as your own doctor had never said that. I certainly don't think you should feel you HAVE to be in a study.

    That being said, I think there can be a lot of advantages to being in a study. You will be under very careful supervision, and regular testing.

    Actually it sounds like the drugs they are suggesting to you are very similar to the drugs I might be trying next (I have Stage III rectal cancer, with regular recurrences to the lung over the past few years, in spite of various chemo combinations).

    Mass General and Dana Farber both have excellent reputations.

    Be sure that any and all questions that you have are answered -- and that good explanations are being offered to you....

    Please keep us posted on how it goes. And I'll let you know if I end up with something similar....I'll know after next week.

    Tara
  • tammy41
    tammy41 Member Posts: 48
    #3
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    taraHK said:

    Hi Tammy,
    I am glad you
    Hi Tammy,

    I am glad you posted -- welcome to this board although it sounds like you are already a well-read member!

    First of all, I am so sorry the doctor made that comment about "you have used up all your options". Not a nice thing to say, especially as your own doctor had never said that. I certainly don't think you should feel you HAVE to be in a study.

    That being said, I think there can be a lot of advantages to being in a study. You will be under very careful supervision, and regular testing.

    Actually it sounds like the drugs they are suggesting to you are very similar to the drugs I might be trying next (I have Stage III rectal cancer, with regular recurrences to the lung over the past few years, in spite of various chemo combinations).

    Mass General and Dana Farber both have excellent reputations.

    Be sure that any and all questions that you have are answered -- and that good explanations are being offered to you....

    Please keep us posted on how it goes. And I'll let you know if I end up with something similar....I'll know after next week.

    Tara

    thanks
    thank you tara i wasnt hearing back from anyone and i was getting scared glad to hear mass general and dana farber have great reputations please let me know how things go for you again thanks
  • kimby
    kimby Member Posts: 797
    #4
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    Clinical Trial
    Tammy,

    So sorry you are at such a scary place right now. I agree with everything Tara said!

    Please know that clinical trials can be a very good thing. They are no longer a last resort. I have been in 2 clinical studies but have not met the qualifications thus far for most clinical trials. You will get excellent care with a much lower doctor/nurse/patient ratio. They will monitor your progress and side effects very closely. I think you will be pleased. In the MRI study I was in, (I spent an hour in the MRI machine every-other-week) I would frequently hear the complaints of patients waiting for their MRI and how horrible they are. The ongoing joke was that they needed the study team because I never had any of those issues. (And I mean NEVER!)

    You are in good hands with Dana Farber and Mass Gen. I think you will be pleased with your outcomes. Just don't ever let a doctor tell you there is not hope or nothing else to be done. Those are your decisions. I know we were raised to respect doctors, and I do - they have saved my life! But, I am in charge of my treatment and my attitude. It takes time for a doctor to get to know you, but mine now know that I want the truth; my truth does not include anything but moving forward to the next thing necessary. There are almost always options.

    Good luck and hugs,

    Kimby
  • tammy41
    tammy41 Member Posts: 48
    #5
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    kimby said:

    Clinical Trial
    Tammy,

    So sorry you are at such a scary place right now. I agree with everything Tara said!

    Please know that clinical trials can be a very good thing. They are no longer a last resort. I have been in 2 clinical studies but have not met the qualifications thus far for most clinical trials. You will get excellent care with a much lower doctor/nurse/patient ratio. They will monitor your progress and side effects very closely. I think you will be pleased. In the MRI study I was in, (I spent an hour in the MRI machine every-other-week) I would frequently hear the complaints of patients waiting for their MRI and how horrible they are. The ongoing joke was that they needed the study team because I never had any of those issues. (And I mean NEVER!)

    You are in good hands with Dana Farber and Mass Gen. I think you will be pleased with your outcomes. Just don't ever let a doctor tell you there is not hope or nothing else to be done. Those are your decisions. I know we were raised to respect doctors, and I do - they have saved my life! But, I am in charge of my treatment and my attitude. It takes time for a doctor to get to know you, but mine now know that I want the truth; my truth does not include anything but moving forward to the next thing necessary. There are almost always options.

    Good luck and hugs,

    Kimby

    thank you kimby
    thank you i feel soooooo much better. kind of looking forward to starting cant be all that bad right.

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