what next?

rls67
rls67 Member Posts: 127
in Colorectal Cancer #1

Has anyone here have Folfox and Folfiri both with avastin fail them? What tx is usually used after those don't work? 

Comments

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #2
     
    Hi,
    Quick question, is your

     

    Hi,

    Quick question, is your wife a Kras mutant or Kras wild type?  If Kras wild, they could possibly put her on Erbitux.

    Cyn

  • rls67
    rls67 Member Posts: 127
    #3
    LivinginNH said:

     
    Hi,
    Quick question, is your

     

    Hi,

    Quick question, is your wife a Kras mutant or Kras wild type?  If Kras wild, they could possibly put her on Erbitux.

    Cyn

    Not sure.

    They did test for that last week. We haven't got the results back yet.

  • rls67
    rls67 Member Posts: 127
    #4
    LivinginNH said:

     
    Hi,
    Quick question, is your

     

    Hi,

    Quick question, is your wife a Kras mutant or Kras wild type?  If Kras wild, they could possibly put her on Erbitux.

    Cyn

    Hi cyn,

    just talked to her primary Dr. They still don't have the results back. I told them to forward them to Roswell, that is where she is getting a second opinion at. The more I dig, the more incompetant her treatment has been. They don't have any pathilogical results from when she was diagnosed. They don't have the report of the colonoscopy from when she was first diagnosed. They don't even have her ct scans! Just a report from whatever tech happened to look at them!

    I don't know if all of this is standard procedure, but Roswell cancer institute could not understand why they did not have any of the reports or scans in her file. I hope she didn't waste a year at that place if there was someplace better out there. We trusted them.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #5
    rls67 said:

    Hi cyn,

    just talked to her primary Dr. They still don't have the results back. I told them to forward them to Roswell, that is where she is getting a second opinion at. The more I dig, the more incompetant her treatment has been. They don't have any pathilogical results from when she was diagnosed. They don't have the report of the colonoscopy from when she was first diagnosed. They don't even have her ct scans! Just a report from whatever tech happened to look at them!

    I don't know if all of this is standard procedure, but Roswell cancer institute could not understand why they did not have any of the reports or scans in her file. I hope she didn't waste a year at that place if there was someplace better out there. We trusted them.

    It sounds like they are shaky on some of the paperwork,

    but I do think you can feel confident that the chemo path they had your wife on (FOLFOX first, then FOLFIRI) is pretty much standard.  It's likely that she would have had a similar experience at any other clinic.  So don't beat yourself up too much about trusting them!

    There are a variety of other chemos being tried with CRC patients...Zaltrap, etc.  And there are other things being tried in trials that might be right for her.  I know a woman on another cancer site who has stretched her stage 4 dx a long ways with a couple of clinical trials, followed up with surgery (not possible before she did the trials and got things stable).  So hopefully Roswell will be up to date on all these possibilities.

    Keep us posted!

    Hugs to you both~AA

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #6
    rls67 said:

    Hi cyn,

    just talked to her primary Dr. They still don't have the results back. I told them to forward them to Roswell, that is where she is getting a second opinion at. The more I dig, the more incompetant her treatment has been. They don't have any pathilogical results from when she was diagnosed. They don't have the report of the colonoscopy from when she was first diagnosed. They don't even have her ct scans! Just a report from whatever tech happened to look at them!

    I don't know if all of this is standard procedure, but Roswell cancer institute could not understand why they did not have any of the reports or scans in her file. I hope she didn't waste a year at that place if there was someplace better out there. We trusted them.

    Anna is right. Your wife has

    Anna is right. Your wife has been on a standard chemo path. Unfortunately I have had a lot of the same issues with records, communication etc. over the course of 8 years. I even integrated all of my doctors to one cancer hospital 2 years ago to hopefully avoid that but my oncologist there has been just as disapointing as before. Dealing with some of the doctors and hospitals can be just a stressful as the cancer itself which isn't right but I guess that is the system or lack thereof. You just have to keep fighting and demanding answers and be your wifes own advocate. I have fired 2 oncologist for lack of communication and not following all of my records. IMO there is no excuse.

  • rls67
    rls67 Member Posts: 127
    #7
    annalexandria said:

    It sounds like they are shaky on some of the paperwork,

    but I do think you can feel confident that the chemo path they had your wife on (FOLFOX first, then FOLFIRI) is pretty much standard.  It's likely that she would have had a similar experience at any other clinic.  So don't beat yourself up too much about trusting them!

    There are a variety of other chemos being tried with CRC patients...Zaltrap, etc.  And there are other things being tried in trials that might be right for her.  I know a woman on another cancer site who has stretched her stage 4 dx a long ways with a couple of clinical trials, followed up with surgery (not possible before she did the trials and got things stable).  So hopefully Roswell will be up to date on all these possibilities.

    Keep us posted!

    Hugs to you both~AA

    Thanks AA,

    So far the insurance co. has declined Zaltrap, calling it a trial drug. Hopefuly the Dr. can straighten it out. I'm hoping to hear something new in regards to treatment. This can be so frustrating sometimes, which I'm sure your well aware of. I was pretty disapointed when they didn't work and just wondered if that happens to alot of people.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #8
    ERZ and omissions

    We've compiled all own records.  It's faster and liberating.

    Some people here have had success with additions of gemcitabine, celecoxib, specialized megavitamins or alternatives to 5FU based treatments.  At MSK they often do hepatic arterial infustions for liver treatments.  

    Multimodal treatments, like  chemo combined with surgeries and RFA procedures can be important.  Another liver option is SIR spheres.

    If erbitux, regorafenib and zaltrap aren't doable,  the active chemo options necessarily become alternative or experimental in nature. 

     

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