should we wait?

rls67
rls67 Member Posts: 127
in Colorectal Cancer #1

My wife was told on thursday the dr. is putting her on stivarga because zaltrap and xeloda didn't work. In fact the cancer got worse. He said he is out of options if the stivarga does not work. He then said he would contact the cleveland clinic or sloan kettering. My question is, should we wait to see if this new drug, which isn't a chemo pill, works before contacting some other cancer center? To be honost, I don't have much hope this new pill will work. Iam confused. What should I do?

Comments

  • geotina
    geotina Member Posts: 2,111 Member
    #2
    Ris

    Why not do both.  Get the ball rolling now for these other centers while she starts the new drug combo.  It can often take a few weeks to gather records, get appointments, etc. 

    Wishing you the best - Tina

     

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #3
    I agree with Tina, do both.

    I agree with Tina, do both.  To be very honest, I'm not sure Stivarga will work either.  The reason I say that is because when Steve was told he should not take it due to the poor conditioner of his liver, the onc explained to him that it likely wouldn't do much to help, anyways.  He said that when this med was as approved several years ago, the oncology community had high hopes.  He went on to explain that it's just not as effective as everyone had hoped.  It does not take much for the cancer to spiral out of control.  Timing is everything.  Don't wait.  Take the pill, but set up app's at these other clinics.  They're the best of the best and I'm sure they'll be able to offer some different teatement options.  I would not wait.

     

    Good luck!

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #4
    I agree with Tina. I don't

    I agree with Tina. I don't experience with stirvaga but from what I have read most people do not have positive results with it.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #5
    I agree!

    Maybe it's a good idea to do both. 

    Laughing

  • coloCan
    coloCan Member Posts: 1,944 Member
    #6
    UncleBuddy said:

    I agree!

    Maybe it's a good idea to do both. 

    Laughing

    ask about adding Sorafenib

     to the regorafenib/

     

     

     

     

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

    ask about adding Sorafenib

     to the regorafenib/

     

     

     

     

    thank you

    I will ask the dr about that. Thank you all for your much needed advice.I appreciate it.

  • Goldie1
    Goldie1 Member Posts: 264 Member
    #8
    Yes, we did...

    My husband Pat just started Stivarga (regorafenib) in November and he was referred by his oncologist to Fox Chase Cancer Center.  First appointment was last Friday, met doctor, had all my husband's records/info/forms submitted to Fox Chase, and now are all set to return if and when the Stivarga is no longer working.  I think it was important to get all the "paperwork" out of the way and actually meeting the new doctor beforehand was an asset too.  

    While Stivarga is not chemo, it may hinder the signals that tell cancer cells to multiply, may stop the creation of new blood vessels that feed cancer cells, and may slow the growth of tissue that connects cancer cells.  My husband's start on this med was a bit rocky (side effects) but he is feeling a bit better now.  And he is more than willing to keep going on it for as long as it is working.  Trying to stay positive and hoping for some good results.

    So, my opinion, yes, contact Cleveland or Sloan and get started early!

    All the best,

    Ellen

     

  • rls67
    rls67 Member Posts: 127
    #9
    Goldie1 said:

    Yes, we did...

    My husband Pat just started Stivarga (regorafenib) in November and he was referred by his oncologist to Fox Chase Cancer Center.  First appointment was last Friday, met doctor, had all my husband's records/info/forms submitted to Fox Chase, and now are all set to return if and when the Stivarga is no longer working.  I think it was important to get all the "paperwork" out of the way and actually meeting the new doctor beforehand was an asset too.  

    While Stivarga is not chemo, it may hinder the signals that tell cancer cells to multiply, may stop the creation of new blood vessels that feed cancer cells, and may slow the growth of tissue that connects cancer cells.  My husband's start on this med was a bit rocky (side effects) but he is feeling a bit better now.  And he is more than willing to keep going on it for as long as it is working.  Trying to stay positive and hoping for some good results.

    So, my opinion, yes, contact Cleveland or Sloan and get started early!

    All the best,

    Ellen

     

    Thank you Ellen, I think you

    Thank you Ellen, I think you gave me some great information. Is your husband on any other treatment or just stivarga? I hope everything works out for him. It sounds like you are doing a great job. 

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #10
    Some good advice here.

    I would also suggest searching on the "R" word at the Colon Club forum.  There's a thread there discussing it.

  • coloCan
    coloCan Member Posts: 1,944 Member
    #11
    coloCan said:

    ask about adding Sorafenib

     to the regorafenib/

     

     

     

     

    misread article suggesting addition of sorafenib:

    www.thealmagest.com/drug-combination-therapy-causes-cancer-cells-eat/6103

    (its the unmentioned kinase-inhibitor that should be added....i think)

     

     

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

    Some good advice here.

    I would also suggest searching on the "R" word at the Colon Club forum.  There's a thread there discussing it.

    Hi Anna,

    I read that thread on colon club. The more I read about this stivarga the more I don't seem to confident it will work.

  • rls67
    rls67 Member Posts: 127
    #13
    I am confused and scared.

    I just got off the phone with a cc specialist from Roswell cancer institute. I asked the dr should we get the ball rolling on clinical trials. She thinks we should meet with the drs. from Sloan-Kettering memorial ASAP. The dr. said they might have a trial drug better than stivarga. The problem is, my wife is scared. So am I to be honost. I don't know what to do. The dr doesn't want us to wait to long. Her oncologist wants her to do stivarga first. Please help, I am desperate.

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #14
    rls67 said:

    I am confused and scared.

    I just got off the phone with a cc specialist from Roswell cancer institute. I asked the dr should we get the ball rolling on clinical trials. She thinks we should meet with the drs. from Sloan-Kettering memorial ASAP. The dr. said they might have a trial drug better than stivarga. The problem is, my wife is scared. So am I to be honost. I don't know what to do. The dr doesn't want us to wait to long. Her oncologist wants her to do stivarga first. Please help, I am desperate.

    I'd say

    Do as the specialist recommends and get ahold of the drs. At Sloan-Kettering ASAP.

    Wishing you both well.

    Winter Marie

  • Goldie1
    Goldie1 Member Posts: 264 Member
    #15
    rls67 said:

    I am confused and scared.

    I just got off the phone with a cc specialist from Roswell cancer institute. I asked the dr should we get the ball rolling on clinical trials. She thinks we should meet with the drs. from Sloan-Kettering memorial ASAP. The dr. said they might have a trial drug better than stivarga. The problem is, my wife is scared. So am I to be honost. I don't know what to do. The dr doesn't want us to wait to long. Her oncologist wants her to do stivarga first. Please help, I am desperate.

    Decisions...

    I would find out what the trial involves.  They would have to discuss all the pros and cons of the trial and ultimately the decision is up to you and your wife, whether she wants to participate in that trial.  I can understand that your wife's doctor would like to do the Stivarga before the trial.  I'm thinking that your wife's doctor would rather your wife follow protocol and go with a med already on the market compared to one that is still in the trial phase.  

    Is is possible that your wife's doctor could speak to the doctor involved with the trial?  Maybe they could come together with a treatment plan. 

    Believe me, I can see how difficult this decision is for you both.  Talk to the docs again and hopefully you can get some more answers that will help you along.

    Ellen

     

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #16
    rls67 said:

    I am confused and scared.

    I just got off the phone with a cc specialist from Roswell cancer institute. I asked the dr should we get the ball rolling on clinical trials. She thinks we should meet with the drs. from Sloan-Kettering memorial ASAP. The dr. said they might have a trial drug better than stivarga. The problem is, my wife is scared. So am I to be honost. I don't know what to do. The dr doesn't want us to wait to long. Her oncologist wants her to do stivarga first. Please help, I am desperate.

    Skip Stivarga.  It likely

    Skip Stivarga.  It likely won't work and she'll lose time.  Get to Sloan ASAP.  I'm guessing that you and your wife trust and have a very good rapport with the regular onc who is recommending Stivarga.  I know how unsettling and scary this is for you both.  I think most people here at CSN would agree with me.  We can see your situation objectively.  Get her to Sloan as soon as possible.

    Hang in there.

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #17
    Chelsea71 said:

    Skip Stivarga.  It likely

    Skip Stivarga.  It likely won't work and she'll lose time.  Get to Sloan ASAP.  I'm guessing that you and your wife trust and have a very good rapport with the regular onc who is recommending Stivarga.  I know how unsettling and scary this is for you both.  I think most people here at CSN would agree with me.  We can see your situation objectively.  Get her to Sloan as soon as possible.

    Hang in there.

     
    I'm with Chelsea, Sloan

     

    I'm with Chelsea, Sloan would be my choice as well. 

    All my best,

    Cynthia

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #18
    rls67 said:

    I am confused and scared.

    I just got off the phone with a cc specialist from Roswell cancer institute. I asked the dr should we get the ball rolling on clinical trials. She thinks we should meet with the drs. from Sloan-Kettering memorial ASAP. The dr. said they might have a trial drug better than stivarga. The problem is, my wife is scared. So am I to be honost. I don't know what to do. The dr doesn't want us to wait to long. Her oncologist wants her to do stivarga first. Please help, I am desperate.

    Meet with the Sloan docs, imo.

    If they say they have a trial that is better, I would believe them.  The sad fact is that I haven't seen anyone yet on these forums have any luck with the Stivarga.  If you want to discuss it further with her regular doctor, I would ask him for numbers...what % of patients respond to this chemo, and for how long?  And what is the nature of the response?  Partial shrinkage, complete remission, what?  If he's honest with you about that, I think it will help your wife make a better decision.

    There are some promising trials out there (I know one woman who has been on three different trials over the last few years, and although she still has some active disease, is doing pretty well, and is two years past her so-called "expiration date").

     

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