question about chemo

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rls67
rls67 Member Posts: 127
in Colorectal Cancer #1

Back in sept of this year, my wife had a ct scan after three months on folfiri and avastin. The scan showed minimal growth, about .5 percent. The doctor took her off folfiri and put her on zaltrap and xeloda. Now, after another scan right before thanksgiving, the cancer grew 50%. He wants to put her on stivarga, which isn't a chemo at all. My wife wants to go back on folfiri. If it was pretty much keeping her stable, would it do it again if she went back on it? 

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  • jen2012
    jen2012 Member Posts: 1,607 Member
    #2
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    How many rounds of folfiri

    How many rounds of folfiri did she do?  What was the reasoning for switching?

  • rls67
    rls67 Member Posts: 127
    #3
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    jen2012 said:

    How many rounds of folfiri

    How many rounds of folfiri did she do?  What was the reasoning for switching?

    Hi Jen,

    She did 9 or 10 rounds of folfiri. I have no idea why he took her off it. The colon cancer specialist at Roswell cancer institute who gave her a second opinion wondered the same thing. I am pretty upset with it. I have no faith in her general oncologist. 

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #4
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    rls67 said:

    Hi Jen,

    She did 9 or 10 rounds of folfiri. I have no idea why he took her off it. The colon cancer specialist at Roswell cancer institute who gave her a second opinion wondered the same thing. I am pretty upset with it. I have no faith in her general oncologist. 

    Hi!

    I'm not an expert, but if you're doubting her oncologist and the cc specialist at Roswell questioned it, maybe you need to find a new oncologist. You need to have confidence that her onc is doing the right thing. If you doubt that, move on and find someone new. I've seen others on here change oncs, I would do it in a heartbeat if I felt my brother's onc wasn't doing right by him. Good luck.

    Lin

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #5
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    The minimal growth your wife

    The minimal growth your wife experienced while on Folfiri means her cancer got smart.  Folfiri wasn't working for her.  It would be different if there was shrinkage or no growth.  The tumors were starting to grow a little bit.  It wouldn't have taken long for them them to start growing more rapidly.  My husband Steve had a great response to Folfiri the first time around.  The second time around he started with Folfiri and had a good response.  After five months scans showed "minimal growth".  Switched to Folfox.  Next scan showed significant growth and development of new tumors (including the lung).  It was explained to us that often the cancer cells quickly catch on to the 5fu chemos.  So, for some people, when Folfox quits working, Folfiri is also ineffective. (and vice versa).  Steve, having  a kras mutation, had no other choice than Stivarga.  Even though your wifes tumors grew a very small amount while on Folfiri, I suspect it would be a matter of a very short time before the growth became more rapid.  I'm guessing her onc thinks her cancer cells would recognize the Folfiri.  Has she tried Folfox?  The doctors at Sloan will steer you in the right direction.  You should at least go for a consultation appointment.  If you have a bad gut feeling about her current onc - move on.  

  • rls67
    rls67 Member Posts: 127
    #6
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    Chelsea71 said:

    The minimal growth your wife

    The minimal growth your wife experienced while on Folfiri means her cancer got smart.  Folfiri wasn't working for her.  It would be different if there was shrinkage or no growth.  The tumors were starting to grow a little bit.  It wouldn't have taken long for them them to start growing more rapidly.  My husband Steve had a great response to Folfiri the first time around.  The second time around he started with Folfiri and had a good response.  After five months scans showed "minimal growth".  Switched to Folfox.  Next scan showed significant growth and development of new tumors (including the lung).  It was explained to us that often the cancer cells quickly catch on to the 5fu chemos.  So, for some people, when Folfox quits working, Folfiri is also ineffective. (and vice versa).  Steve, having  a kras mutation, had no other choice than Stivarga.  Even though your wifes tumors grew a very small amount while on Folfiri, I suspect it would be a matter of a very short time before the growth became more rapid.  I'm guessing her onc thinks her cancer cells would recognize the Folfiri.  Has she tried Folfox?  The doctors at Sloan will steer you in the right direction.  You should at least go for a consultation appointment.  If you have a bad gut feeling about her current onc - move on.  

    The onc switched her

    The onc switched her treatment from once every two weeks to once every three weeks. Couldn't that be the reason for the minimal growth? I contacted sloan, cleveland clinic and roswell, only to be told there are no trials, We live to far away, she's had to much chemo. I am not ready to go down the stivarga road. Everything I read about is bad side effects with no improvement. Stivarga would seem like giving up to me. What would she have to lose doing the folfiri again? The only other option left might be cancer center of america. That has to be better than stivarga.

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #7
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    rls67 said:

    The onc switched her

    The onc switched her treatment from once every two weeks to once every three weeks. Couldn't that be the reason for the minimal growth? I contacted sloan, cleveland clinic and roswell, only to be told there are no trials, We live to far away, she's had to much chemo. I am not ready to go down the stivarga road. Everything I read about is bad side effects with no improvement. Stivarga would seem like giving up to me. What would she have to lose doing the folfiri again? The only other option left might be cancer center of america. That has to be better than stivarga.

    I would think switching from

    I would think switching from every 2 weeks to 3 weeks could explain the minimal growth.  I don't think she would have anything to lose with trying the Folfiri again.  Plus time has passed since she was last on Folfiri.  Perhaps her cancer cells will be more sensitive to it.  I agree with you about Stivarga.  It almost seems like its offered as a last ditch treatment offer to humor the patient. I get the impression that the onc's don't have a lot of confidence in its abilities.  The side effects seem quite nasty.  Can't hurt to talk to CCOA.  These decisions are so hard......  So much pressure.  Would her onc be willing to revisit Folfiri?

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #8
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    rls67 said:

    The onc switched her

    The onc switched her treatment from once every two weeks to once every three weeks. Couldn't that be the reason for the minimal growth? I contacted sloan, cleveland clinic and roswell, only to be told there are no trials, We live to far away, she's had to much chemo. I am not ready to go down the stivarga road. Everything I read about is bad side effects with no improvement. Stivarga would seem like giving up to me. What would she have to lose doing the folfiri again? The only other option left might be cancer center of america. That has to be better than stivarga.

    Have you asked the onc about the switch to 3 weeks?

    There are probably studies that back up his decision (at least I hope so).  From my experience with chemo, the research includes a lot of variations to figure out what regimen works best, so they might know what the difference is in prognosis with 2 vs 3 weeks (if there is one).  When I developed extremely bad neuropathy while on FOLFOX, for example, the onc reduced the dosage by 20%.  This meant by the end of the program, I had missed out on an entire cycle.  But he said that the research showed that one less cycle made no significant difference in prognosis.  He also said that the oxy drug that causes the neuropathy only accounts for 5% of the total outcome.  

    Anyway, there may be a legit reason for the change.  He should have made it clear to you guys in the first place.

    I wish I had better answers for you.  This is such a tremendously hard situation.

  • rls67
    rls67 Member Posts: 127
    #9
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    Thank you all,

    I am sitting in the ER as I write this. My wife started experiencing extreme pain and could not breath deep with out a lot of pain. I had to call 911 for an ambulance. Don't have the blood test back yet. I am praying it isn't anything to serious. I am scared though.

  • Hooley
    Hooley Member Posts: 156
    #10
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    rls67 said:

    Thank you all,

    I am sitting in the ER as I write this. My wife started experiencing extreme pain and could not breath deep with out a lot of pain. I had to call 911 for an ambulance. Don't have the blood test back yet. I am praying it isn't anything to serious. I am scared though.

    Prayers

    Praying for u too right now.  I pray for Gods peace, that passeth all understanding

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #11
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    rls67 said:

    Thank you all,

    I am sitting in the ER as I write this. My wife started experiencing extreme pain and could not breath deep with out a lot of pain. I had to call 911 for an ambulance. Don't have the blood test back yet. I am praying it isn't anything to serious. I am scared though.

    Sorry to read about this

    Sorry to read about this latest development.  Hopefully it's nothing serious.  Perhaps it's stress related.  Please give us an update when you can.  

  • rls67
    rls67 Member Posts: 127
    #12
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    Chelsea71 said:

    Sorry to read about this

    Sorry to read about this latest development.  Hopefully it's nothing serious.  Perhaps it's stress related.  Please give us an update when you can.  

    Thank you hooley and chelsea

    Still haven't heard anything. They did a ultra sound. The dr said her liver is enlarged. She doesn't think thats whats causing the pain.

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

    Thank you hooley and chelsea

    Still haven't heard anything. They did a ultra sound. The dr said her liver is enlarged. She doesn't think thats whats causing the pain.

    I am sorry to hear about all

    I am sorry to hear about all of the hard times. To answer your question I did FOLFIRI on two different occassions. I have heard of otherpeople going back on a drug combination that they did I n the past. I wonder why he stopped on FOLFIRI if it seemed to be working.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #14
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    rls67 said:

    Thank you all,

    I am sitting in the ER as I write this. My wife started experiencing extreme pain and could not breath deep with out a lot of pain. I had to call 911 for an ambulance. Don't have the blood test back yet. I am praying it isn't anything to serious. I am scared though.

    Is she home? Have they
    Is she home? Have they figured out whats going on?
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #15
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    rls67 said:

    Thank you hooley and chelsea

    Still haven't heard anything. They did a ultra sound. The dr said her liver is enlarged. She doesn't think thats whats causing the pain.

    Please update us

    When you can if possible.  Hope she is doing better.

    Winter Marie

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #16
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    Treatment

    I've never been on that, but have heard that drug mentioned recently.  Can't comment on that but hoping that whatever you decide that it is a drug that will help.  Good luck because it's so hard to find a drug that works for everyone.  That is the reason why there are so many.  Hope she does good on it if she participates in it.

    Kim

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #17
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    rls67 said:

    Thank you hooley and chelsea

    Still haven't heard anything. They did a ultra sound. The dr said her liver is enlarged. She doesn't think thats whats causing the pain.

    Gosh, this is scary.

    Please let us know how she's doing when you can.

    Hugs to you both~AA

  • rls67
    rls67 Member Posts: 127
    #18
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    jen2012 said:

    Is she home? Have they
    Is she home? Have they figured out whats going on?

    Hi Jen,

    well they sort of. The hospital did a ultra sound on her and said they found a stone in a bile duct that was blocking everything. so they sent her to endoscopy to try and pluck that stone out on thursday. Well they couldn't get to it, so they had to send her by ambulance to another hospital which would be able to do it. They did the procedure again yesterday, but to everyones surprise, there was no stone. The dr cleaned and widened her duct so everything flows through better. He said she has a lot of tumors on her liver and some of the smaller capalaries (sp?) are blocked by the tumors. She still had pain last night though. I don't know if it because of the procrdure or something else.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #19
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    rls67 said:

    Hi Jen,

    well they sort of. The hospital did a ultra sound on her and said they found a stone in a bile duct that was blocking everything. so they sent her to endoscopy to try and pluck that stone out on thursday. Well they couldn't get to it, so they had to send her by ambulance to another hospital which would be able to do it. They did the procedure again yesterday, but to everyones surprise, there was no stone. The dr cleaned and widened her duct so everything flows through better. He said she has a lot of tumors on her liver and some of the smaller capalaries (sp?) are blocked by the tumors. She still had pain last night though. I don't know if it because of the procrdure or something else.

    Im sorry she is still in
    Im sorry she is still in pain. This is so hard to deal with :( Wish a cure would come along already.
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #20
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    rls67 said:

    Hi Jen,

    well they sort of. The hospital did a ultra sound on her and said they found a stone in a bile duct that was blocking everything. so they sent her to endoscopy to try and pluck that stone out on thursday. Well they couldn't get to it, so they had to send her by ambulance to another hospital which would be able to do it. They did the procedure again yesterday, but to everyones surprise, there was no stone. The dr cleaned and widened her duct so everything flows through better. He said she has a lot of tumors on her liver and some of the smaller capalaries (sp?) are blocked by the tumors. She still had pain last night though. I don't know if it because of the procrdure or something else.

    I hope she's feeling better soon.

    If she continues to have pain, you could ask to talk to a pain management doctor.  It seems like pain should be minimized, esp as she's in the hospital.  Keep us posted on how she's doing, we're all thinking about both of you and hoping for the best,

    AA

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