AMG386...anyone ever heard of this?

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karen1951
karen1951 Member Posts: 103
in Ovarian Cancer #1
my friend in california has a good friend who is a research scientist....all he does is sit in the lab and look for a cure for cancer.....he claims amg386 holds the most promise for recurrence. i had my first recurrence in november after a 10 month remission. topotecan did nothing for me and so i was just switched to gemzar. i had no side effects from the topotecan and always wondered if it was working....it just made sense to me that if it was indeed working that i would be feeling some side effects. now with the gemzar i'm having the same thing...no side effects to speak of. for the first time, i feel i am truly going downhill. i just had to have my lung drained, and now my stomach is filling up with fluid. the cancer is spreading to the liver, small bowel and in the lymph nodes of my upper abdomen. i feel like if something doesn't arrest this soon, i will not survive. i made an appointment for a second opinion...something i thought i'd never do...next friday. i'ts not that i don't have faith in my oncologist, but i know i'd always wonder if i did everything possible if i didn't get a second opinion. i'm hoping for the best....karen

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  • JoWin615
    JoWin615 Member Posts: 150 Member
    #2
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    AMG386 and OVCA?
    Is this a drug used for ovarian cancer? I've never heard of it, but that doesn't mean much (!). It does sound as though a second opinion would be a good idea in your case. I'll be thinking of and praying for you.

    Cheers,
    Jo
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #3
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    Second opinion
    It is your life so a second opinion is a good idea. I did not have a lot of problems on chemo yet it was still working so don't give up on Gemzar it seems like it is mild for a lot of people. You are in my thoughts today, this is such a difficult struggle what works for some won't work for others, good luck
    Colleen
  • snowbird_11
    snowbird_11 Member Posts: 160
    #4
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    I am in California and the
    I am in California and the gyn-onc I saw in Nov for a second opinion said he had patients in a clinical trial of AMG 386 in combination with paclitaxol for ovarian ca. It is an antiangiogenesis agent but I believe it works differently than avastin. He was quite optimistic about its potential. He was suggesting carboplatin single agent first so I would still be eligible for the trial as a next option.
  • Mwee
    Mwee Member Posts: 1,338
    #5
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    Gemzar
    seems to have more mild side effects than taxol, carbo, cisplatin or doxil. I wouldn't assume you're not getting results from how many side efeets you're having to deal with, but you won't really know till after about four doses. I'm glad that you're seeking a second opinion and we'll be waiting to hear how that goes. I hope you get relief from that fluid build up..
    (((HUGS))) Maria
  • antcat
    antcat Member Posts: 270
    #6
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    Dear Karen
    I'm kind of in the same situation as you. I've been on numerous chemotherapies and never really had any side effects until I was on Topotecan, that's when my blood counts started go down a little, I've since been on Alimta which has made me anemic and now I'm on an oral pill, Hexalen, which has been used just for ovarian cancer that has not responded. I don't know how this is going to work out, but I'm trying. I've been constipated with this and my blood counts are still in the anemic level. Dr. gave me a prescription (liquid) for the constipation, so we'll see. I've seen several different oncologists and they're really all the same, it's sad, it's like try this then try that. I, myself am getting discouraged, but my family wants me to keep fighting. Take care
  • karen1951
    karen1951 Member Posts: 103
    #7
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    antcat said:

    Dear Karen
    I'm kind of in the same situation as you. I've been on numerous chemotherapies and never really had any side effects until I was on Topotecan, that's when my blood counts started go down a little, I've since been on Alimta which has made me anemic and now I'm on an oral pill, Hexalen, which has been used just for ovarian cancer that has not responded. I don't know how this is going to work out, but I'm trying. I've been constipated with this and my blood counts are still in the anemic level. Dr. gave me a prescription (liquid) for the constipation, so we'll see. I've seen several different oncologists and they're really all the same, it's sad, it's like try this then try that. I, myself am getting discouraged, but my family wants me to keep fighting. Take care

    dear antcat...you don't have
    dear antcat...you don't have a profile listed so i'd like to hear more about your situation. i'm hoping that this new oncologist will tell me that i've been doing everything exactly as i should be doing because if he says i'm doing it all wrong, then who do you believe? it's bad enough to be sick but to question whether you are getting the correct treatment plan just plain stinks. all i know is that i'm going in a negative direction and i'm ok with that (well...not really) if it's the only option i have. good luck to you....you can email me directly if you want.... cengbarth@aol.com .....karen
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #8
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    Karen & Ant
    Sending you both prayers for a new direction and options for treatment...

    I say seek as many opinions as it takes for you to get what is out there...knowledge is power :)

    Keep us posted....this new information helps so many !

    Laurie
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #9
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    karen1951 said:

    dear antcat...you don't have
    dear antcat...you don't have a profile listed so i'd like to hear more about your situation. i'm hoping that this new oncologist will tell me that i've been doing everything exactly as i should be doing because if he says i'm doing it all wrong, then who do you believe? it's bad enough to be sick but to question whether you are getting the correct treatment plan just plain stinks. all i know is that i'm going in a negative direction and i'm ok with that (well...not really) if it's the only option i have. good luck to you....you can email me directly if you want.... cengbarth@aol.com .....karen

    Hello Karen again
    I have just replied to one of your posts in another message thread.

    We think alike. I have always wondered why I was NEVER offered surgery. I used to think the doctors know best and have just accepted it. BUT, like you I am worried that I am not on the best treatment plan.

    Have you had surgery? I was told when I orginally asked that it was futile as my cancer cells were tiny and wouldn't make any difference.

    Take care tina
  • jbeans888
    jbeans888 Member Posts: 313
    #10
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    TiggersDoBounce said:

    Karen & Ant
    Sending you both prayers for a new direction and options for treatment...

    I say seek as many opinions as it takes for you to get what is out there...knowledge is power :)

    Keep us posted....this new information helps so many !

    Laurie

    I totally am on the
    I totally am on the samenpage. I really am not happy with my doctors and I can't switch due to no health insurance. I feel like they just do what they where text book trainined to do. My gym/onc totally says the opoposit of what my hematologist says. So it's so annoying. I have to push just to get a scan. I go in march for a follow up and I am dreading it. But anyways, second opinions are good of you can do it
  • jbeans888
    jbeans888 Member Posts: 313
    #11
    Options
    TiggersDoBounce said:

    Karen & Ant
    Sending you both prayers for a new direction and options for treatment...

    I say seek as many opinions as it takes for you to get what is out there...knowledge is power :)

    Keep us posted....this new information helps so many !

    Laurie

    I totally am on the
    I totally am on the samenpage. I really am not happy with my doctors and I can't switch due to no health insurance. I feel like they just do what they where text book trainined to do. My gym/onc totally says the opoposit of what my hematologist says. So it's so annoying. I have to push just to get a scan. I go in march for a follow up and I am dreading it. But anyways, second opinions are good of you can do it
  • karen1951
    karen1951 Member Posts: 103
    #12
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    Tina Brown said:

    Hello Karen again
    I have just replied to one of your posts in another message thread.

    We think alike. I have always wondered why I was NEVER offered surgery. I used to think the doctors know best and have just accepted it. BUT, like you I am worried that I am not on the best treatment plan.

    Have you had surgery? I was told when I orginally asked that it was futile as my cancer cells were tiny and wouldn't make any difference.

    Take care tina

    hi tina.....glad the
    hi tina.....glad the topotecan is working for you...i can't wait until friday to get this second opinion. something has gotta give here. i did have a massive debulking surgery right after i was diagnosed which included a colostomy. i now have ascites in my lungs (again!) and in my abdomen on the same side as the stoma from the colostomy. that causes considerable pain because it pushes the stoma out. i also asked my oncologist about surgery but he said since lymph nodes are involved that are deep in the abdomen that surgery would be too complicated and recovery of 6 weeks would allow the cancer to just grow before chemo could start again. i just feel like these single agents ... 1st tamoxifen, then topotecan, and now gemzar..aren't doing much to keep this from progressing. if the 2nd opinion confirms i'm doing all i can then i will just have to accept it.. this is maddening.....karen
  • karen1951
    karen1951 Member Posts: 103
    #13
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    jbeans888 said:

    I totally am on the
    I totally am on the samenpage. I really am not happy with my doctors and I can't switch due to no health insurance. I feel like they just do what they where text book trainined to do. My gym/onc totally says the opoposit of what my hematologist says. So it's so annoying. I have to push just to get a scan. I go in march for a follow up and I am dreading it. But anyways, second opinions are good of you can do it

    jbeans888...you totally hit
    jbeans888...you totally hit the nail on the head....i feel that my oncologist stays right within the boundary of what the textbook says even tho i'm clearly going downhill fast. but i guess the other constraint is what insurance will pay for. when he switched me from topotecan to gemzar i had to sit there for an hour before they could start the infusion to make sure my insurance would pay for it. geez!!!

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