One Last Hope

Mo67
Mo67 Member Posts: 17
edited March 2014 in Colorectal Cancer #1
It's been a very long time since I have posted anything. My aunt was diagnosed with colon cancer a year and a bit ago. She had a colostomy which didn't help and then a multitude of chemo treatments. I believe she has been on both the Avastin and Folfox (Sp?). Unfortunately 2 weeks ago she was told the chemo had stopped working and that the cancer has spread to the liver and lungs and now is in a lot of pain. The reality of this awful disease is sinking in. As a very close knit family she has a ton of support. But I don't think anything can relly prepare you for the end.

The Dr.did mention the possibility of a new treatment - one where she would have a certain gene to match to be able to go through this treatment. I do not have many details. Has anyone heard of this new treatment.(sorry to be so vague) And if so is there any possiilities that this could help her remain with us a little longer.

Any information you can provide me would be greatly appreciated
Kind regards
Mo.

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    Mo
    It sounds like you might be talking about the drug ERBITUX - I believe that there is test called KRAS that checks to see if your genes can work with this treatment. If there is a match then the drug can be administered, if not, then it is not available.

    You might check and see if what I have written is what you are describing. If it is, there are many people here that I know who have done, or are doing Erbitux and it has been very succesful for them. 2 of the names that jump out are Phil (phillieg) and Eric (Eric38). There will be more wonderful folks in behind me, who have direct experience and knowledge of this who can offer their expertise and opinions here. I have not done this drug, so I only know of it from what what I hear from the folks who have done it...or are doing it.

    It may not be the end - don't give in just yet. Liver can be treated with RFA, CyberKnife, HAI implants, HIPEC, chemo emobolization and so on.

    Lung can be treated with CyberKnife and also the DaVinci robot surgical system - I had 2 tumors removed from my lungs with this space age device and it was a good surgery.

    Too many options right now - so don't wave the white flag just yet - let's take some info you get in this post, and talk it over with your onc, get a 2nd opinion if necessary, and then let's re-assess where we are at - then we'll move forward again.

    The End is something that nobody can ever really prepare for - but I think we should change the title to..."The New Beginning."

    Please post back what you find out - nice to meet you BTW - the best of luck going forward - we're all pulling for you - Welcome Back too!

    -Craig
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #3
    tests
    Hi,

    What the dr may be referring to is to genetically test for a kras mutation. If your aunt has the mutation (30-40% of patients do), then she would not be able to take the drugs Erbitux or Vectibix (Erbitux is also referred to as cetuximab- not sure about the other name for Vectibix). If your aunt tests as negative for the kras mutation (also known as "kras wild-type"), then she could take Erbitux. Many people have a very good response to this drug. I have the kras mutation, so it won't work for me, but there are others on this board who have taken it successfully. Phil (philleg) is one & I know there are others. Erbitux is part of the standard approved FDA treatments for colorectal cancer, so insurance will pay for it.

    In addition to Erbitux, they are now starting to do numerous genetic tests for check for certain things for certain new drugs. Most of these drugs are only now available through clinical trials, but will eventually be the wave of the future- tailor made treatments according to the genetic makeup of your cancer.
    They are able to do these genetic tests by using tissue samples from blocks containing bits of the tumor(s) removed during surgery. I had liver surgery a year and a half ago and didn't even know the hospital kept bits of my tumor like this until months later when a doctor wanted to get me kras tested.

    Best wishes-
    Lisa
  • Mo67
    Mo67 Member Posts: 17
    #4
    Sundanceh said:

    Mo
    It sounds like you might be talking about the drug ERBITUX - I believe that there is test called KRAS that checks to see if your genes can work with this treatment. If there is a match then the drug can be administered, if not, then it is not available.

    You might check and see if what I have written is what you are describing. If it is, there are many people here that I know who have done, or are doing Erbitux and it has been very succesful for them. 2 of the names that jump out are Phil (phillieg) and Eric (Eric38). There will be more wonderful folks in behind me, who have direct experience and knowledge of this who can offer their expertise and opinions here. I have not done this drug, so I only know of it from what what I hear from the folks who have done it...or are doing it.

    It may not be the end - don't give in just yet. Liver can be treated with RFA, CyberKnife, HAI implants, HIPEC, chemo emobolization and so on.

    Lung can be treated with CyberKnife and also the DaVinci robot surgical system - I had 2 tumors removed from my lungs with this space age device and it was a good surgery.

    Too many options right now - so don't wave the white flag just yet - let's take some info you get in this post, and talk it over with your onc, get a 2nd opinion if necessary, and then let's re-assess where we are at - then we'll move forward again.

    The End is something that nobody can ever really prepare for - but I think we should change the title to..."The New Beginning."

    Please post back what you find out - nice to meet you BTW - the best of luck going forward - we're all pulling for you - Welcome Back too!

    -Craig

    Thank you so much
    Hi Craig

    Wow thank you for your very detailed and quick reply. I am going to go and google this drug up and see what it is all about. My Cousin has been going to all her Dr. appts with her as I live in a different city than her but am trying to gather as much info as I can for us all. I realized after I had orignally sent out the post that my subject lines was rather negative so I did change it.

    She was so filled with life at Xmas and now as I understand it she is really in a lot of pain. They go to the pain clinic tomorrow so hopefully she will get something to make her feel better.

    Thank you for the support and kind words. This is a wonderful website which I have found much solace in. I gave it to my Aunt and her family a while back however but she was not ready to share her experience. So I do it for all of us. Again thank you. I will be sure to keep you posted.

    Cheers

    Mo.
  • eric38
    eric38 Member Posts: 583
    #5
    lisa42 said:

    tests
    Hi,

    What the dr may be referring to is to genetically test for a kras mutation. If your aunt has the mutation (30-40% of patients do), then she would not be able to take the drugs Erbitux or Vectibix (Erbitux is also referred to as cetuximab- not sure about the other name for Vectibix). If your aunt tests as negative for the kras mutation (also known as "kras wild-type"), then she could take Erbitux. Many people have a very good response to this drug. I have the kras mutation, so it won't work for me, but there are others on this board who have taken it successfully. Phil (philleg) is one & I know there are others. Erbitux is part of the standard approved FDA treatments for colorectal cancer, so insurance will pay for it.

    In addition to Erbitux, they are now starting to do numerous genetic tests for check for certain things for certain new drugs. Most of these drugs are only now available through clinical trials, but will eventually be the wave of the future- tailor made treatments according to the genetic makeup of your cancer.
    They are able to do these genetic tests by using tissue samples from blocks containing bits of the tumor(s) removed during surgery. I had liver surgery a year and a half ago and didn't even know the hospital kept bits of my tumor like this until months later when a doctor wanted to get me kras tested.

    Best wishes-
    Lisa

    Where there is life, there is hope.
    If erbitux is indeed the drug you are talking about I am one of the ones for whom it has been succesful. I have advanced disease and the erbitux in conjunction with chemo put me in remission. It was so succesful that the doctor stopped treatment before my body got used to it so he could put it on the back burner in case I needed it later. I have mets in my liver along with lymph node activity in the abdomen, pelvis, and rectum. On the scan after that treatment it showed everything completely clear including my liver. Since then I have been on two other treatments but the last one didn`t work. Everything is back but the good news is it`s no worse than it was when I started. I`m just starting back from scratch which is discouraging but I do have the erbitux treatment to fall back on. The Doc says he is putting me back on it because it was so succesful the first time. He`s says he feels confident that he can put me back in remission with it. my point is, while my current situation is unfortunate I did very well on erbitux when I was taking it. Erbitux itself does not kill cancer but it keeps it from advancing. It worked well for me and hopefully will again and Phil never has been in remission but he has been on erbitux for 3 years and is doing well. The only thing is that it causes a nasty rash that subsides over time but it is really nasty when it first breaks out. Hopefully your mother will test well for this drug and be able to use it. I hope this message gives you some hope. Erbitux does not cure but it is good for extending life expectancy. Eric
  • Mo67
    Mo67 Member Posts: 17
    #6
    lisa42 said:

    tests
    Hi,

    What the dr may be referring to is to genetically test for a kras mutation. If your aunt has the mutation (30-40% of patients do), then she would not be able to take the drugs Erbitux or Vectibix (Erbitux is also referred to as cetuximab- not sure about the other name for Vectibix). If your aunt tests as negative for the kras mutation (also known as "kras wild-type"), then she could take Erbitux. Many people have a very good response to this drug. I have the kras mutation, so it won't work for me, but there are others on this board who have taken it successfully. Phil (philleg) is one & I know there are others. Erbitux is part of the standard approved FDA treatments for colorectal cancer, so insurance will pay for it.

    In addition to Erbitux, they are now starting to do numerous genetic tests for check for certain things for certain new drugs. Most of these drugs are only now available through clinical trials, but will eventually be the wave of the future- tailor made treatments according to the genetic makeup of your cancer.
    They are able to do these genetic tests by using tissue samples from blocks containing bits of the tumor(s) removed during surgery. I had liver surgery a year and a half ago and didn't even know the hospital kept bits of my tumor like this until months later when a doctor wanted to get me kras tested.

    Best wishes-
    Lisa

    Thank you Lisa
    Hi Lisa

    I am not sure how to thank each individual separately on this link so I am sure everyone will see this - however just wanted to say thank you for extending your knowledge on this new drug. I plan on looking it up on google ASAP. I have found everyone on this site so helpful and kind. I just can't say thank you enough.

    I hope you are in recovery mode yourself and I wish you nothing but success going forward
    Best Wishes

    Mo
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #7
    Mo67 said:

    Thank you so much
    Hi Craig

    Wow thank you for your very detailed and quick reply. I am going to go and google this drug up and see what it is all about. My Cousin has been going to all her Dr. appts with her as I live in a different city than her but am trying to gather as much info as I can for us all. I realized after I had orignally sent out the post that my subject lines was rather negative so I did change it.

    She was so filled with life at Xmas and now as I understand it she is really in a lot of pain. They go to the pain clinic tomorrow so hopefully she will get something to make her feel better.

    Thank you for the support and kind words. This is a wonderful website which I have found much solace in. I gave it to my Aunt and her family a while back however but she was not ready to share her experience. So I do it for all of us. Again thank you. I will be sure to keep you posted.

    Cheers

    Mo.

    Hi again, Mo
    I did not mean to imply that your title needed to be changed physically - my bad :(

    I was talking more philosophically - "The New Beginning" in fighting this battle instead of The End. Not to say your title needed changing - it caught my eye BTW.

    I just did not want you to misinterpret what I was trying to say - you can label or post anything that you like.

    You take care - good hearing from you - I see everyone is coming over the hill, so I'll be over here in the corner if I'm needed.

    -Craig
  • Mo67
    Mo67 Member Posts: 17
    #8
    eric38 said:

    Where there is life, there is hope.
    If erbitux is indeed the drug you are talking about I am one of the ones for whom it has been succesful. I have advanced disease and the erbitux in conjunction with chemo put me in remission. It was so succesful that the doctor stopped treatment before my body got used to it so he could put it on the back burner in case I needed it later. I have mets in my liver along with lymph node activity in the abdomen, pelvis, and rectum. On the scan after that treatment it showed everything completely clear including my liver. Since then I have been on two other treatments but the last one didn`t work. Everything is back but the good news is it`s no worse than it was when I started. I`m just starting back from scratch which is discouraging but I do have the erbitux treatment to fall back on. The Doc says he is putting me back on it because it was so succesful the first time. He`s says he feels confident that he can put me back in remission with it. my point is, while my current situation is unfortunate I did very well on erbitux when I was taking it. Erbitux itself does not kill cancer but it keeps it from advancing. It worked well for me and hopefully will again and Phil never has been in remission but he has been on erbitux for 3 years and is doing well. The only thing is that it causes a nasty rash that subsides over time but it is really nasty when it first breaks out. Hopefully your mother will test well for this drug and be able to use it. I hope this message gives you some hope. Erbitux does not cure but it is good for extending life expectancy. Eric

    Thank you Eric
    Thank you so much Eric. Your email has given me some renewed hope for my Aunt. I am sorry that you have had to endure such an awful thing like cancer. I am glad that this new drug was somewhat of a success for you. ( despite the return of the disease). I hope for continued success and that you beat this terrible disease. My thanks and prayers are with you going forward.

    Regards
    Morag
  • kimby
    kimby Member Posts: 797
    #9
    Mo
    I've been around awhile and I have a liver full of tumors and am gearing up to treat the lung mets, not to mention celiac lymph nodes. I also don't plan on checking out anytime soon.

    Time for her to get a second opinion, 3rd opinion...whatever it takes. If she wants to fight there are more treatments that have been mentioned in this thread. I wasn't a candidate for any of the currently available liver treatments. I was given a very short timeline by a liver surgeon. I didn't listen and neither did my radiation or medical onc. They put something together that just isn't done. I've tripled the timeline I was given. They work together and make it up as they go along. lol

    Read the Expression pages of the members here. Read their posts. You will be inspired. It will give you HOPE.

    Outwit. Outplay. Outlast.

    Kimby
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #10
    kimby said:

    Mo
    I've been around awhile and I have a liver full of tumors and am gearing up to treat the lung mets, not to mention celiac lymph nodes. I also don't plan on checking out anytime soon.

    Time for her to get a second opinion, 3rd opinion...whatever it takes. If she wants to fight there are more treatments that have been mentioned in this thread. I wasn't a candidate for any of the currently available liver treatments. I was given a very short timeline by a liver surgeon. I didn't listen and neither did my radiation or medical onc. They put something together that just isn't done. I've tripled the timeline I was given. They work together and make it up as they go along. lol

    Read the Expression pages of the members here. Read their posts. You will be inspired. It will give you HOPE.

    Outwit. Outplay. Outlast.

    Kimby

    Kimby
    Kimby,

    I just wanted to say that you're really an inspiration to me (and others, I'm sure)!
    No one give up!!!!!


    Lisa
  • kimby
    kimby Member Posts: 797
    #11
    lisa42 said:

    Kimby
    Kimby,

    I just wanted to say that you're really an inspiration to me (and others, I'm sure)!
    No one give up!!!!!


    Lisa

    Lisa
    Thank you for the kind words. I am inspired everyday by you and the other wonderful members here. Ours stories are different but our spirits are kindred.

    Outwit. Outplay. Outlast.

    Kimby

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