Stopping Folfox after 8?

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AmaP3
AmaP3 Member Posts: 10

i am trying to decide whether to stop follow chemo after 8 rounds, rather than completing 12. So hard to make a decision based only on broad statistics. My blood doesn't show cancer markers, and no scan can show evidence of microscopic cancer cells that may or may not exist.

Neuropathy is my main concern, plus fatigue and brain fog. Not debilitating yet, but I dont want to wait till it is. Also, I'm set to travel and work overseas in less than 3 months. I need time to get my mental and physical strength back.

Wishing for a crystal ball...

Stage 3 colon cancer, 5/38 lymph nodes affected.

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  • abrub
    abrub Member Posts: 2,174 Member
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    I quit after 7

    Basically same thoughts - I had severe neuropathy; didn't yet have chemo brain; markers showed nothing, and I was told we'd never know if the chemo was of benefit to me.  I quit before symptoms got worse (and there are studies to see if fewer treatments are as effective.)

    Yes, my cancer came back, but I don't think that the chemo would have changed that.

    PM me if you want to discuss my thought processes.

    Alice

  • zx10guy
    zx10guy Member Posts: 273 Member
    edited June 2017 #3
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    This might give you all some

    This might give you all some comfort.  New proposed guidelines of shortening the length of the standard follow up FOLFOX chemo treatment from 6 months to 3 months.

     

    http://www.asco.org/about-asco/press-center/news-releases/global-study-sets-new-risk-based-standard-personalize

    http://www.medscape.com/viewarticle/881081

     

  • NewHere
    NewHere Member Posts: 1,427 Member
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    Folfox

    My oncologist(s) said each bit of the cocktail in FOLFOX helps a bit, with the Oxaliplatin helping a few percentage points.  They also said that even though they go for 12 treatments, they hope for a minimum of 8 with the Oxaliplatin but no more than 10 with the Oxaliplatin due to the risk of neuropathy outweighing the benefit of vis a vis curtailing the cancer.  

    Outside the U.S. there are places that only go for three months and studies (like zx10guy mentioned) are ongoing to perhaps change that in the U.S.  The trials have been going on awhile, including when I was in chemo in the Summer of 2015.

    Speak it over with you oncologist, maybe drop the Ox.  Note that it is not linear (according to my doc).  He called that part off for me when the neuropathy failed to resolve between my treatments.  I found myself tired about 2/3rds through when the steroids wore off, which was about 2 days after the disconnect.  Then I would crash.  But otherwise I was doing a lot of things, including going to ballgames and walking miles around the park.  (Stage IVB, 11 out of 21 Lymph nodes)

  • Tunadog
    Tunadog Member Posts: 235 Member
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    Talk to your Onc...

    I did the full run of Oxaliplatin and had some symptoms near the end...

    Then after the treatment my Neuropathy got worse. I had my last infusion 7-27-2016 and I am still recovering. My hands have resolved 95%, my feet 60-70%, no pain just balance problems and discomfort.

    I wish I would have stopped a couple of months earlier.  (Still not driving)

    Peace 

  • AmaP3
    AmaP3 Member Posts: 10
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    zx10guy said:

    This might give you all some

    This might give you all some comfort.  New proposed guidelines of shortening the length of the standard follow up FOLFOX chemo treatment from 6 months to 3 months.

     

    http://www.asco.org/about-asco/press-center/news-releases/global-study-sets-new-risk-based-standard-personalize

    http://www.medscape.com/viewarticle/881081

     

    NIH study

    Thanks for the reference to this current study. I have also read an older NIH study that supported 8 rounds of  Folfox. I am not sure whether my stage 3 tumor was high-risk, but the side-by-side results are pretty convincing, especially since I had four full months, not three.

     

  • AmaP3
    AmaP3 Member Posts: 10
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    abrub said:

    I quit after 7

    Basically same thoughts - I had severe neuropathy; didn't yet have chemo brain; markers showed nothing, and I was told we'd never know if the chemo was of benefit to me.  I quit before symptoms got worse (and there are studies to see if fewer treatments are as effective.)

    Yes, my cancer came back, but I don't think that the chemo would have changed that.

    PM me if you want to discuss my thought processes.

    Alice

    Quit after 7

    Sorry to hear you've had a recurrence. I tell my family that recurrence is fairly likely no matter what I do, but I know it will be tough if it happens. I think 7 or 8 rounds of full-dose Folfox is good enough. I know I'm no oncologist, and I may be pushing toward getting off just because I'm sick of the whole routine. But, I really think I've reached a happy medium among all of the opinions out there. 

    I'm curious, did your neuropathy decrease or disappear?

  • AmaP3
    AmaP3 Member Posts: 10
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    NewHere said:

    Folfox

    My oncologist(s) said each bit of the cocktail in FOLFOX helps a bit, with the Oxaliplatin helping a few percentage points.  They also said that even though they go for 12 treatments, they hope for a minimum of 8 with the Oxaliplatin but no more than 10 with the Oxaliplatin due to the risk of neuropathy outweighing the benefit of vis a vis curtailing the cancer.  

    Outside the U.S. there are places that only go for three months and studies (like zx10guy mentioned) are ongoing to perhaps change that in the U.S.  The trials have been going on awhile, including when I was in chemo in the Summer of 2015.

    Speak it over with you oncologist, maybe drop the Ox.  Note that it is not linear (according to my doc).  He called that part off for me when the neuropathy failed to resolve between my treatments.  I found myself tired about 2/3rds through when the steroids wore off, which was about 2 days after the disconnect.  Then I would crash.  But otherwise I was doing a lot of things, including going to ballgames and walking miles around the park.  (Stage IVB, 11 out of 21 Lymph nodes)

    folfox

    Thanks for your perspective. My neuropathy no longer disappears between rounds, so I'm concerned about long-term effects. Also tired of being tired!

    You're right about getting out. I haven't spent enough time doing non-cancer activities, especially outdoors. Whenever I do, it helps. That's another reason to get out of this toxic fog--I'll do more.

  • AmaP3
    AmaP3 Member Posts: 10
    edited June 2017 #9
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    Thanks. Scary to think of the

    Thanks. Scary to think of the neuropathy getting so bad I can't drive, hike, etc. hope yours continues to ease up.

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Welcome to the forum

    Sorry that you have joined our little group of Cancer patients and caregivers. 

    I had nine FOLFOX treatments almost four years ago. I still have neuroptathy, mostly in my legs and feet, but diminished feeling in my finger tips and lack of strength in my hands. 

    Sadly, I had a terribly hard time with the brain fog, which has never quite gone away. I get confused very quickly. 

    Best to keep a keen eye on how you are reacting to your treatments. 

    I hope you are able to make a decision that you feel comfortable with. I also hope that you are well for your upcoming work trip.  

    Tru

     

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited June 2017 #11
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    I had a very hard time

    I had a very hard time deciding if I was going to do the follow up chemo, it was oxypalatin. Folfox, actually. I had done 8 or 10 of 12, I can't remember, and I was planning to tell my onc I was done when I had a blood clot and was stopped from continuing it. I have mets now but they're right at the opening to the lung that had the blod clot and they were sticking tubes and things like that down it when I was in the ICU so I wonder if this was an irritant that caused the recurrence rather than the cancer returning because of not finishing the chemo.

    But- I also didn't start the follow up chemo within the time it's supposed to start because of some other issues to do with my treatments and waiting longer than the number of weeks I was supposed to start it within after surgery really diminishes the effectiveness of the chemo. So, no real answers from me, unfortunately.

    As for neuropathy, the cold sensitivity went away fairly quickly, I think, I was in a coma for the first few weeks after the blood clot but when I woke up I don;t remember it being an issue. I do have it still in my feet but is slowly getting better. It's been two and a half years. It feels kind of like they went to sleep but not as bad as that feeling can be. Actually, it's more like I walked in mud and let it dry on them, like they're caked in something but they also tingle. Most of the time I hardly notice.

    I've heard, I think it was on this forum, that the protocal in Europe is 6 treatments so in my opinion you'd be good at 8. But that's just me. I hope you'll do what you feel is best and are comfortable with the decision. Good luck!

    Jan

  • AmaP3
    AmaP3 Member Posts: 10
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    I'm amazed at what you and

    I'm amazed at what you and many other people have gone through. It's a reminder that, so far, this experience has been mild as far as stage 3 cancer and chemo can be mild. But, that is why I want to stop while I'm ahead. I already have persistent neuropathy, and I don't want to let that develop any further. 

    Im glad you're past the worst now. Thanks for your support.

  • AmaP3
    AmaP3 Member Posts: 10
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    Trubrit, thank you for

    Trubrit, thank you for sharing your experience with Folfox. Glad to hear that your treatments were four years ago. That's a good sign. I am feeling more and more comfortable about stopping chemo now, especially after hearing so many cases of long-term neuropathy and other side effects. Someday we'll see all of this more clearly and shake our heads at the methods we had to use.

  • abrub
    abrub Member Posts: 2,174 Member
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    AmaP3 said:

    Quit after 7

    Sorry to hear you've had a recurrence. I tell my family that recurrence is fairly likely no matter what I do, but I know it will be tough if it happens. I think 7 or 8 rounds of full-dose Folfox is good enough. I know I'm no oncologist, and I may be pushing toward getting off just because I'm sick of the whole routine. But, I really think I've reached a happy medium among all of the opinions out there. 

    I'm curious, did your neuropathy decrease or disappear?

    Neuropathy decreased

    But never went away completely. I've found insoles that work for me (and are no longer available) and ice last some fine motor skills,  but nothing serious.  At this point!, I live a full normal life, fully active. 

    There is a balance to consider : are the potentially permanent side effects from treatment and their potential  impact on quality of life worth it in the grand scheme of things. Only you can make that decision for yourself. You need to be comfortable with wh a terrible additional rounds of chemo may be buying you. In my case, my on X gated up front th a time the chemo might provide no benefit at all, but he wanted to try it nonetheless.  When I decided to stop,my Dr's did not try to dissuade me..

    Additional note:  my recurrence was treated surgically (as much as possible).  I also had Intraperitoneal Chemo again, but couldn't tolerate it to complete.  Because of where/how my recurrence occured, I didn't even consider systemic chemo/folfox again.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited June 2017 #15
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    AmaP3 said:

    I'm amazed at what you and

    I'm amazed at what you and many other people have gone through. It's a reminder that, so far, this experience has been mild as far as stage 3 cancer and chemo can be mild. But, that is why I want to stop while I'm ahead. I already have persistent neuropathy, and I don't want to let that develop any further. 

    Im glad you're past the worst now. Thanks for your support.

    Everyone's situation is

    Everyone's situation is different and yours is not less because you were fortunate to not have certain side effects or responses that are nasty. I think the worst part of this is psychological. In that you're no different than anyone else with this. The fear, the anticipation of treatments, the not knowing, the acceptance that this is a life long issue whether we become NED or not. It's just a tough thing to live with. Every time we have something unusual it's 'is it the cancer??' It's overwhelming and soul sucking. It's hard on our families and loved ones. It's just a terrible thing to have to go through and have in our lives.

    But when it really gets me down I think about how I'm lucky. Right now I'm feeling great even with the lung mets. I'm working, I'm feeling good. Yesterday I spent most of the day at the barn where my daughter and I board our horses. I was exhausted last night. But I was exhausted because I was able to ride and work with my horse and walk all over the place and help with stuff. When I was paralyzed after the blood clot I didn't know if I'd ever walk again. My rehab doctor told me the best case scenario would be to send me home in a wheelchair. I remember thinking 'to hell with that'. I did go home in a wheelchair but I was riding my horse just over a month later. Not well but i was up there.

    Anyway, not to go on a long discussion of my situation but when I was in the hospital I befriended a man about my age- 52 at the time- who was there waiting to get a room in a nursing home. He had MS. He was almost completely incapacitated. It really brought me some clarity. Here we were, both in wheelchairs but I was wrking to get out of mine while he was only going to get worse. I had hope while he didn't. It was heartbreaking. His wife rarely visited and his teenage daughter refused to visit. I promised that when I got out and he was in his nursing home room I'd come and visit. Then it turned out that only people designated as allowed by his wife could visit and I don't know her. My point is that when I think about him I think how very lucky I am. My onc says I have about ten years to live. I'm doing a lot better than he is and I have to be grateful for that.

    Jan 

  • Phoenix_66
    Phoenix_66 Member Posts: 118
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    When to Stop?

    I can tell you that I have fought this mess for the past 11 years and still continue to fight it.  They prescribed 12 rounds of FOLFOX in 2006 but I stopped after 10.  The cancer returned in 2013 and they presribed another 12 rounds of FOLFOX along with irrenatikin and avastin and an additional 1-1/2 years of avastin after the initial treatments.  I stopped this mix after 10 rounds as well but continued the avastin for the prescribed additional 1-1/2 years.  Now it appears that the cancer may be returning (tests tomorrow) so I really don't know if the 12 treatment regiment is better than the 10.  Most likely I am facing another 12 rounds of FOLFOX beginning in July even though my doctor says there is no data past the 8 treatment to support going the full 12.  Probably not much help

  • AmaP3
    AmaP3 Member Posts: 10
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    Amazing that even after 7

    Amazing that even after 7 years your cancer came back! Sorry to hear you're back in this arena. Interesting what your doctor said about 8 cycles of Folfox vs 12.

  • Joan M
    Joan M Member Posts: 409 Member
    edited June 2017 #18
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    I am stage 4, so things may be different for you at stage 3

    I had 8 rounds of chemo then maintainence chemo.  The doctor at the local clinic ordered 12 rounds of Oxaliplatin and 5FU, but when I consulted with Axel Grothey at Mayo Clinic, he said that 8 rounds would be just as effective and would reduce the possibility of longterm neuropathy.  I had stage 4 with tumors in my liver and lungs.  I was told surgery was not an option for me, so am on maintainence chemo for the rest of my life.  I get Avastin infusions every 3 weeks and take Xeloda tablets for 14 days, then 7 off.

    My tumors continued to shrink and the colon tumor even dissappeared while on the xeloda.  I had 2 procedures to get rid of the tumors in my liver (Ablation and therespheres).  I still have some small lung tumors and will find out this summer if they will do anything for them.  They were so small the doctors think the chemo has killed them all, but a couple still showed up on the scan in January.  

    All this to stay alive longer.  My doctors have all told me I cannot be cured, and that even if I get rid of all the visible tumors, that because I am Stage 4 "it always comes back".

    Good luck and God Bless you!

    Joan  

  • AmaP3
    AmaP3 Member Posts: 10
    edited June 2017 #19
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    Joan M said:

    I am stage 4, so things may be different for you at stage 3

    I had 8 rounds of chemo then maintainence chemo.  The doctor at the local clinic ordered 12 rounds of Oxaliplatin and 5FU, but when I consulted with Axel Grothey at Mayo Clinic, he said that 8 rounds would be just as effective and would reduce the possibility of longterm neuropathy.  I had stage 4 with tumors in my liver and lungs.  I was told surgery was not an option for me, so am on maintainence chemo for the rest of my life.  I get Avastin infusions every 3 weeks and take Xeloda tablets for 14 days, then 7 off.

    My tumors continued to shrink and the colon tumor even dissappeared while on the xeloda.  I had 2 procedures to get rid of the tumors in my liver (Ablation and therespheres).  I still have some small lung tumors and will find out this summer if they will do anything for them.  They were so small the doctors think the chemo has killed them all, but a couple still showed up on the scan in January.  

    All this to stay alive longer.  My doctors have all told me I cannot be cured, and that even if I get rid of all the visible tumors, that because I am Stage 4 "it always comes back".

    Good luck and God Bless you!

    Joan  

    Thank you for the

    Thank you for the confirmation about doing only 8 rounds.? I'm glad to hear you are finding so much help with stage 4 tumors. My stage three may one day move into that realm.

  • doylukban
    doylukban Member Posts: 1
    edited June 2017 #20
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    I did 8 rounds of folfox for

    I did 8 rounds of folfox for my CRC with mets to the liver.  My onco stopped the regimen and now I am only doing the oxaliplatin component plus xeloda after there were further mets to my lungs.  I also did cetuximab and TACE as an adjunct to my treatment regimen.

     

     

  • Phoenix_66
    Phoenix_66 Member Posts: 118
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    doylukban said:

    I did 8 rounds of folfox for

    I did 8 rounds of folfox for my CRC with mets to the liver.  My onco stopped the regimen and now I am only doing the oxaliplatin component plus xeloda after there were further mets to my lungs.  I also did cetuximab and TACE as an adjunct to my treatment regimen.

     

     

    Side Effect

    Doylukban, what side effects did you experience with cetuximab?  That is one of the targeted treatments they are considering for me.