erbitux not working :(

AnneCan
AnneCan Member Posts: 3,673 Member
Hi everyone,

I went to the hospital with a fever on Monday, had a multitude of tests, including a CT scan which showed prgression of my cancer + therefore the erbitux not working. There is no traditinal chemo left fot me to try. I asked my onc about clinical trials ; the only ones nearby right now are stage 1 + my onc says I have to be "stronger" to be considered for these - I don't know that I would try one of these even if I could. I am looking to make my body as strong as I can; suggestions are welcome! Please do not feel sorry for me; I have had a wonderful run so far. I am married to the love of my life (25 years in July) with two beautiful, amazing daughters. I still plan to fight this tooth + nail. I continue to applaud everyone's success, large + small. I am out of the hospital on a weekend pass, today is my birthday. Thinking about all of you.
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Comments

  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    So sorry
    Enjoy your birthday, and your family. There is lots of comfort in knowing you are loved.

    Blake
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Buckwirth said:

    So sorry
    Enjoy your birthday, and your family. There is lots of comfort in knowing you are loved.

    Blake

    Happy birthday Anne! So sorry about your news.
    As I posted few days ago my onc told me about vaccines , this not chemo ,it seems they reinforce your immune system and it's your own body who fight against cancer!. I would suggest to ask your onc.Beside that hope you are feeling better than last few days ! take care. Enjoy the weekend and birthday! .
    Hugs dearest Anne!
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    pepebcn said:

    Happy birthday Anne! So sorry about your news.
    As I posted few days ago my onc told me about vaccines , this not chemo ,it seems they reinforce your immune system and it's your own body who fight against cancer!. I would suggest to ask your onc.Beside that hope you are feeling better than last few days ! take care. Enjoy the weekend and birthday! .
    Hugs dearest Anne!

    Here is a link form Greg.
    http://fightcolorectalcancer.org/research_news/2010/11/patients_own_tumor_cells_make_effective_cancer_vaccine
  • SisterSledge
    SisterSledge Member Posts: 332 Member
    your history?
    Hi Anne,

    I'm fairly new here, so I don't know if I've had the honor of reading about your cancer details...but posting it here might help us to know what you've already tried for treatments...traditional and alternative. Give us the lowdown and I for one will put my thinking cap on tight <3

    I hope your birthday celebration is as special as you are...you deserve lotsa smiles today.

    Lotsa love,
    Janine
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dearest Anne
    Happy Birthday! Hope you and your family have a great celebration.

    I am sorry to hear you were in the hospital and the current treatment is not working. While I did not have chemo, I was wondering...if you once had a chemo that worked then stopped working, would they ever go back and try it again? It seems possible that maybe the cancer today would respond again to it. Just a thought.

    If the onc has no options for you perhaps it is time to try one of the alternative options which Lisa or John or others have done.

    You mention you are on a weekend pass from the hospital. Any idea when you will get perm release? From my personal experience, don't know how you can get stronger off of hospital food unless they do better in Canada than here in US.

    Hugs to you and yours,

    Marie who loves kitties
  • pepebcn
    pepebcn Member Posts: 6,331 Member
  • pepebcn
    pepebcn Member Posts: 6,331 Member

    Dearest Anne
    Happy Birthday! Hope you and your family have a great celebration.

    I am sorry to hear you were in the hospital and the current treatment is not working. While I did not have chemo, I was wondering...if you once had a chemo that worked then stopped working, would they ever go back and try it again? It seems possible that maybe the cancer today would respond again to it. Just a thought.

    If the onc has no options for you perhaps it is time to try one of the alternative options which Lisa or John or others have done.

    You mention you are on a weekend pass from the hospital. Any idea when you will get perm release? From my personal experience, don't know how you can get stronger off of hospital food unless they do better in Canada than here in US.

    Hugs to you and yours,

    Marie who loves kitties

    Dear Marie!
    I think hospital food has no remedy in any country !.
    I agree with you as far it's been around couple of years since last round ,chemo use to work again! at least that's what I have been told!.
  • BuckeyedPeach
    BuckeyedPeach Member Posts: 14
    Happy Birthday, Anne!
    I'm new here but wish you a very joyous birthday! I pray also you find something that will help you beat your cancer--and beat it quickly.

    Hugs and blessings,
    Lisa
  • lisa42
    lisa42 Member Posts: 3,625 Member
    How about Gemzar?
    Hi Anne,

    I'm sorry to hear the trouble you've had and that the Erbitux isn't working for you.
    I was also in the position of having "used up" all the approved chemos for colorectal cancer in Feb 2010. That is when I saw Dr. Lenz in L.A. and he recommended to me and to my onc that I take Gemzar (gemcitabine) with either Xeloda or 5FU. I know you're in Canada, so don't know how that works with trying to get something approved that normally isn't approved for our type of cancer. For me, I appealed to my insurance company with all the clinical trial evidence from Dr. Lenz. Two times in a row they denied me- I honestly don't think they even read the information, as it was quite compelling & I also had included letters from my regular onc, an onc I consulted with at UCSD/Moores, along with Dr. Lenz's letter from USC/Norris. The third time was a charm. In the meantime since it was taking so much time, I went ahead and started on it & paid on my credit card for three treatments of it. The insurance still picked everything else up, and I think the actual Gemzar payments were like $1250 a time- something like that. I was sure glad we had success because we certainly couldn't have kept that up. I ended up getting reimbursed for what I put out of pocket too. It was when I wrote a personal letter and submitted it along with all my other info (highlighting important and key bits of info). I made myself a real person in my letter to them- not just a number. I wanted them to know I wasn't a weizened up dying patient, but I was young, a mother of three kids, and relatively otherwise healthy, and were they going to be the ones to cause my death by denying a drug that could save my life??

    I honestly am not sure where I put all my info and copies of what I sent, but I know I have it somewhere in my files. If you are interested in hearing more specifics on this, send me a pm and I will find the info and try to get it to you.

    Gemzar has not been a drug that has made anything in me shrink (actually, it did the first 3 months), but has mainly been acting like a "dam wall"- holding things back. I have had some minor size tumor growth in the past two scans, but we're talking a millimeter or two. No new tumors have popped up anywhere else in my body during this time, and that's a good thing! I've been on the Gemzar, now 5FU (did Xeloda awhile), and Avastin together since March 2010- so well over a year now.

    I know the position you're in well and I know it's scary- blessings to you and let me know if I can help with any info.

    Hugs,
    Lisa
  • BettyJoM
    BettyJoM Member Posts: 82
    Happy Birthday
    I like Janine would like to hear the details of your cancer as I am new and dont know them. Not that we can rethink your oncologist but I have learned quite a few things on here, enough for me to know my oncologist is decent. what a relief..when you dont know anything how can you be sure right?

    there are always other things to try. Janine knows herbs, someone may hit on something for you to ask your doctor about

    you say dont feel sorry for you..but I do, as does everyone else Im sure.
    we all walk on the same path

    I myself will pray for you and your family every day, that will give you strength

    Hugs, Betty Jo
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    BettyJoM said:

    Happy Birthday
    I like Janine would like to hear the details of your cancer as I am new and dont know them. Not that we can rethink your oncologist but I have learned quite a few things on here, enough for me to know my oncologist is decent. what a relief..when you dont know anything how can you be sure right?

    there are always other things to try. Janine knows herbs, someone may hit on something for you to ask your doctor about

    you say dont feel sorry for you..but I do, as does everyone else Im sure.
    we all walk on the same path

    I myself will pray for you and your family every day, that will give you strength

    Hugs, Betty Jo

    Anne, here again! trying to find solutions , as per I remember
    you been on erbitux just since a few weeks ago ,may be I'm wrong ,how many rounds you already had ?.
    Hugs!.
  • pepebcn said:

    Anne, here again! trying to find solutions , as per I remember
    you been on erbitux just since a few weeks ago ,may be I'm wrong ,how many rounds you already had ?.
    Hugs!.

    This comment has been removed by the Moderator
  • tina dasilva
    tina dasilva Member Posts: 641
    Anne
    I'm sorry Anne hugs to you Tina
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    unknown said:

    This comment has been removed by the Moderator

    Hi Anne....
    Happy Birthday! I don't have no brainy ideas right this moment but I just wanted you to know I am thinking about you.

    Jennie
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    It's Your Birthday.....
    .....and I didn't even get you anything, Annie.

    Now, I'm crushed! Well, Happy Birthday to my Canadien Annie:)

    Are we still 29 or is it 30 now? LOL:)

    I like Lisa's idea of the Gemzar - maybe you can ask about Vectibix as well? It may just be Erbitux's cousing, but it might have different properties or agents. I don't know the differences between the two.

    My next stop would be Vectibix if Folfir were to ever stop - and from there clinical trials as well.

    My heart hurts for you, Annie. I've seen the difference in your mood - I see the difference in the way you post. I've known something was wrong and the change started when you started this new treatment. I know you are good at hiding your feelings, but you can never fool Sundance - I know you well enough to sense when things are not my "normal Annie."


    I'll study on this some more - I just want you to get better - want you to feel good. Ok, I won't feel sorry "for you." But I will feel sorry "with you." You're my friend, how can I not hurt over this news?

    You are so brave and steadfast and support so many of us around here - there should be a medal for folks like you. You and many other Canadien friends have shown me how cool the Candadiens really are!

    I'll close for now, but always with you - I don't have international calling or I would buzz you, but if you want to email me, just do it. I'll be here with you and for you.

    -Craig
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Anne
    Anne,
    My thoughts and prayers are with you. I hope you can celebrate your birthday with your family. We are here for you.

    Aloha,
    Kathleen
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Bummer
    So sorry to hear this but don't give up and hope you can have a happy birthday. You are welled loved on this board. Hope you can get another chemo treatment.

    Hugs! Kim
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Happy Birthday!
    I'm sorry the Erbitux isn't working. I'm glad you are here for another birthday and that you got out of the hospital to celebrate!

    I hope you can rest up and get stronger, so you can try something new. Maybe Gemzar? There is also a new drug similar to Avastin that should be released soon. It targets 3 different growth factors instead of just one, and looks hopeful. The clinical trials are done, I think they are going through the paperwork to get it approved and on the market now - Zaltrap.

    Enjoy your weekend with your family.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    So sorry
    I hope you enjoy your weekend pass and do something great for your birthday. Mine was yesterday! I'm very sorry about your news. Praying that a great solution will be found.

    *hugs*
    Gail