scan result not good...

rls67
rls67 Member Posts: 127
in Colorectal Cancer #1

My wife and I just received the results of her scan. She has had 11 rounds of folfox, which wasn't working. They then gave her 10 rounds of folfiri. The dr. just told us it was not working. In fact the tumors on her liver have actually gotten bigger. He also said seven lymph nodes look like cancer. She did not have her treatment today, whats the use i guess if it isn't working right? They are going to do a KRAS testing on her tumor and she will be trying. a new super avastin called flabervastin and Xeloda. Not sure i have the spelling right for the new avastin. Anyone ever hear of this? I know i haven't and I have done a lot of research. How scared should I be knowing the big two stopped working? Right now I am both scared and numb. If anyone can help me out, i would appreciate it. 

Comments

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #2
    I'm so sorry you got such hard news.

    I've had the experience of going through a lot of chemo, only to be told that my cancer grew anyway.  It's a terrible, frustrating experience.  Could you pls remind us of your wife's situation?  Has she had surgery?  And where are her tumors, other than the liver?

    I haven't heard of the new Avastin, but I hope it's effective for your wife.  I know there have been some pretty amazing cases of remission with regular Avastin, and I also have read of cases where several chemos were tried before one worked.  Hopefully this will be the case for your wife.

    Have you gone for a 2nd (or 3rd) opinion?  Sometimes a new set of eyes on things can be useful.

    Sending some strength your way~AA

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #3
    annalexandria said:

    I'm so sorry you got such hard news.

    I've had the experience of going through a lot of chemo, only to be told that my cancer grew anyway.  It's a terrible, frustrating experience.  Could you pls remind us of your wife's situation?  Has she had surgery?  And where are her tumors, other than the liver?

    I haven't heard of the new Avastin, but I hope it's effective for your wife.  I know there have been some pretty amazing cases of remission with regular Avastin, and I also have read of cases where several chemos were tried before one worked.  Hopefully this will be the case for your wife.

    Have you gone for a 2nd (or 3rd) opinion?  Sometimes a new set of eyes on things can be useful.

    Sending some strength your way~AA

    I tried to find that drug you mentioned,

    and can't come up with anything.  Marie who loves Kitties is a good researcher...maybe she'll come along and be able to find you something on it.

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

    I'm so sorry you got such hard news.

    I've had the experience of going through a lot of chemo, only to be told that my cancer grew anyway.  It's a terrible, frustrating experience.  Could you pls remind us of your wife's situation?  Has she had surgery?  And where are her tumors, other than the liver?

    I haven't heard of the new Avastin, but I hope it's effective for your wife.  I know there have been some pretty amazing cases of remission with regular Avastin, and I also have read of cases where several chemos were tried before one worked.  Hopefully this will be the case for your wife.

    Have you gone for a 2nd (or 3rd) opinion?  Sometimes a new set of eyes on things can be useful.

    Sending some strength your way~AA

    Thanks AA,

    My wife was diagnosed Oct 22, 2012 with colon cancer. She also has a few tumors on her liver and some small spots on her lungs. We were told at diagnoses she is inoperable. We have not gone for any second opinions yet. though I am trying to talk her into it. I wish I had wrote down the name of the new chemo she will be on. He said it is like a super avastin and it is brand new. Even the nurses didn't know much about it. They will be doing a KRAS test to make sure it will work. Thank you for your kind words and encouragement AA. I will keep you posted if I find anything else about that new drug.

  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #5
    RLS

    RLS,

     

    I am sorry that the treatments have not been effective.  Please investigate Dr. Nancy Kemeny at Memorial Sloan Kettering and her work with the HAI pump (hepatic arterial infusion pump).  She has had great success with liver-specific patients.  

     

    All the best, 

    Amy

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #6
    rls67 said:

    Thanks AA,

    My wife was diagnosed Oct 22, 2012 with colon cancer. She also has a few tumors on her liver and some small spots on her lungs. We were told at diagnoses she is inoperable. We have not gone for any second opinions yet. though I am trying to talk her into it. I wish I had wrote down the name of the new chemo she will be on. He said it is like a super avastin and it is brand new. Even the nurses didn't know much about it. They will be doing a KRAS test to make sure it will work. Thank you for your kind words and encouragement AA. I will keep you posted if I find anything else about that new drug.

    I would really encourage a 2nd opinion.

    It's especially important to talk to some specialist surgeons if you can.  There are people here on this board who have had each area of growth dealt with surgically, but when you are stage 4 you really have to push to find surgeons willing to do it.  Her oncologist is not the expert in this area either...they know their systemic treatments, but are often not up to speed on latest surgical techniques.

    I know it's exhausting to try and do all this when you are in the midst of such a huge battle, but getting another opinion at the very least gives you the peace of mind that you have done all you can, even if you don't get a different tx plan.  And it may even open up new avenues that her oncologist can't offer.

    Do you live in or near a large city?  That's usually your best bet for finding the top docs.  Some people really recommend going to a designated National Institutes of Health cancer center...you can check here to see if one is near you. 

    http://www.cancer.gov/researchandfunding/extramural/cancercenters

    They tend to be very cutting edge and know the most about research.  But really any big cancer center/hospital with a good rep will probably have an assortment of experienced dotors (esp surgeons) that you could consult with.

    Personally, I have had five surgeries, and that's the only thing that's kept me going so far. It can't hurt to explore this approach a little more.

    You may not have seen it, but there is another thread posted a few days ago, where the OP was told surgery was impossible because of the location of the tumors in the liver.  Several people responed that this was not true, based on their own surgeries.  So not every doctor knows everything.  Right now there is the ALPPS procedure for liver tumors that can take out many tumors, and there's a new procedure for lungs called LAPM that can do up to 100 mets, so you just never know.  There might be something out there for her that offers much more hope.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #7
    annalexandria said:

    I tried to find that drug you mentioned,

    and can't come up with anything.  Marie who loves Kitties is a good researcher...maybe she'll come along and be able to find you something on it.

    Thanks Ann

    Thanks for the vote of confidence in my "research" abilities...

    I was not able to find anything for "flabervastin", but there is lots out there for avastin with Xeloda

    There was a clinical trial completed in 2011, but no results are posted. 

    http://clinicaltrials.gov/ct2/show/NCT00623805

    There is an article from earlier this year which might be of interest:

     

    http://www.chemotherapyadvisor.com/bevacizumab-plus-capecitabine-demonstrates-benefit-for-elderly-patients-with-metastatic-colorectal-cancer/article/277477/

     

    If we can get another name for this "super avastin" will be glad to look further.

    Marie who loves kitties

     

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #8
    Lovekitties said:

    Thanks Ann

    Thanks for the vote of confidence in my "research" abilities...

    I was not able to find anything for "flabervastin", but there is lots out there for avastin with Xeloda

    There was a clinical trial completed in 2011, but no results are posted. 

    http://clinicaltrials.gov/ct2/show/NCT00623805

    There is an article from earlier this year which might be of interest:

     

    http://www.chemotherapyadvisor.com/bevacizumab-plus-capecitabine-demonstrates-benefit-for-elderly-patients-with-metastatic-colorectal-cancer/article/277477/

     

    If we can get another name for this "super avastin" will be glad to look further.

    Marie who loves kitties

     

    As a reference librarian myself,

    I knows it when I sees it!

  • traci43
    traci43 Member Posts: 773 Member
    #9
    that's hard to hear

    Sorry to hear that the chemo is not working.  Maybe if she is KRAS negative they can try Erubitux.  I've heard of another drug that does the same thing as avastin, but not named what you called it and I can't remember the name for sure.  It's strong but with lots of side effects.  Xeloda is a pill form of 5-FU that has fewer side effects. Hope your wife does better on the new drugs.  Prayers headed your way, Traci

  • rls67
    rls67 Member Posts: 127
    #10
    traci43 said:

    that's hard to hear

    Sorry to hear that the chemo is not working.  Maybe if she is KRAS negative they can try Erubitux.  I've heard of another drug that does the same thing as avastin, but not named what you called it and I can't remember the name for sure.  It's strong but with lots of side effects.  Xeloda is a pill form of 5-FU that has fewer side effects. Hope your wife does better on the new drugs.  Prayers headed your way, Traci

    Thank you Tracy. I wish I

    Thank you Tracy. I wish I could remember the name of the new treatment the dr. told us he was going to use. I know it had a funny sounding name and he said it was new. 

    I am going to look into that dr. you told me Amy. I am willing to do whatever it takes to help my wife fight this. Thank you both for your help. I appreciated it so much. If there is anyone out there that may know anything about this new drug, please let me know, thank you.

    .

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #11
    rls67 said:

    Thank you Tracy. I wish I

    Thank you Tracy. I wish I could remember the name of the new treatment the dr. told us he was going to use. I know it had a funny sounding name and he said it was new. 

    I am going to look into that dr. you told me Amy. I am willing to do whatever it takes to help my wife fight this. Thank you both for your help. I appreciated it so much. If there is anyone out there that may know anything about this new drug, please let me know, thank you.

    .

     
    Was it regorafenib by

     

    Was it regorafenib by chance?  That's a new drug that they've been using, but mostly in trials.

  • rls67
    rls67 Member Posts: 127
    #12
    LivinginNH said:

     
    Was it regorafenib by

     

    Was it regorafenib by chance?  That's a new drug that they've been using, but mostly in trials.

    No, I don't think so. I am

    No, I don't think so. I am going to call the dr. office today and see if they can spell it out for me. I appreciate your help though. 

     

    I have been doing some research on Dr Nancy Kemeny in NYC. Her work looks very promising. I think I will give them a call today.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #13
    rls67 said:

    No, I don't think so. I am

    No, I don't think so. I am going to call the dr. office today and see if they can spell it out for me. I appreciate your help though. 

     

    I have been doing some research on Dr Nancy Kemeny in NYC. Her work looks very promising. I think I will give them a call today.

    I think it is Regorafenib.

    I think it is Regorafenib.

  • rls67
    rls67 Member Posts: 127
    #14
    janderson1964 said:

    I think it is Regorafenib.

    I think it is Regorafenib.

    I found the name..

    The drug the dr wants to start her on monday is called Aflibercept. The generic name is Zaltrap. After reading the side effects I am not so sure this stuff isn't worse than the cancer. Has anyone have any experience with this drug? She will be given Xeloda, two weeks on, one week off. Thank you in advance.

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #15
    rls67 said:

    I found the name..

    The drug the dr wants to start her on monday is called Aflibercept. The generic name is Zaltrap. After reading the side effects I am not so sure this stuff isn't worse than the cancer. Has anyone have any experience with this drug? She will be given Xeloda, two weeks on, one week off. Thank you in advance.

    Sundanche is on Zaltrap,  so

    Sundanche is on Zaltrap,  so is Kathryn in min.,    I haven't heard of anyone on xeloda and zaltrap though.   I'm thinking it's usually folfiri, or irinotecan and zaltrap.   I don't know if KRAS status has anything to do with efficacy of Zaltrap.....  he may be looking to see if eributux will be an option.     

  • rls67
    rls67 Member Posts: 127
    #16
    smokeyjoe said:

    Sundanche is on Zaltrap,  so

    Sundanche is on Zaltrap,  so is Kathryn in min.,    I haven't heard of anyone on xeloda and zaltrap though.   I'm thinking it's usually folfiri, or irinotecan and zaltrap.   I don't know if KRAS status has anything to do with efficacy of Zaltrap.....  he may be looking to see if eributux will be an option.     

    I think your right smokey. I

    I think your right smokey. I did some reading on the board and I have mixed feelings about Zaltrap. It sounds pretty rough. Thanks Smokey, much appreciated.

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