No More Ox As Of Today, Plus Interesting News About FOLFOX Study

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NewHere
NewHere Member Posts: 1,427 Member

So went into #10 today.  As I mentioned in other posts, my Onc really keeps on eye on the Ox and the effects, with neuropathy being big concern.  He wanted 9 with the Ox, but my hand is increasing and he said it snowballs, not linear.  So this treatment and the reamaining 2 after this one are Ox free.  

He also mentioned Japan still goes with 12, while U.S. is trending to 9 with Ox due to the risk.  Of course results vary and you should talk to your doctor, but I found it interesting.

They are also working on faster infusions, when I am in the city it is faster treatment because they have found no downside, while it will be rolled out to other MSK sites shortly, so my full infusion runs about 85 minutes in the ciry (when using the Ox in the mix) if I recall correctly.

Lastly there are studies going on about 3 months of FOLFOX compared to 6 months.  Should be interesting.  Maybe in a couple of years, the FOLFOX regime will be 6 sessions.  Having made it through 10 and looking at 12, 6 sounds like a breeze Cool

Anyway, figured I would share some things I heard.  And I am heading into the final stretch Sealed

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  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    Interesting how things

    Interesting how things change. I wonder what the protocal will be in the future. Do you know if the chemo is less effective without the oxyplatin? That was the worst part. I had chemo without it in the spring of 2014 along with radiation and the only side effect I had was fatigue. No neuropathy at all. 

  • NewHere
    NewHere Member Posts: 1,427 Member
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    JanJan63 said:

    Interesting how things

    Interesting how things change. I wonder what the protocal will be in the future. Do you know if the chemo is less effective without the oxyplatin? That was the worst part. I had chemo without it in the spring of 2014 along with radiation and the only side effect I had was fatigue. No neuropathy at all. 

    It seems to add percentage points

    The way my Onc explained it, and from some things I read, the extra percentage points for kicking the C out.  The stats was (for me, Staging and lymph nodes) that 55%-60% chance of it coming back/mets.  With chemo it goes to 25%-30%.  I get a couple of percentage points for being in good health.  A couple of more for an aspirin a day during chemo.  A couple of more for exercising.  All adding a bit.  The Oxi adds points, but the increment (in my Onc's mind based on things read) is the trying to get between 7-9 is the target, with 9 the high end and he won't do more.  The increment of the Ox assist at that point is slowing down and outweighs the risk.

    The neuopathy is something he feels snowballs, and not a linear thing.  Two sessions ago it started, progressed a bit, but always had down time/breaks of hours on end.  The last session not so much, but close to constant.  Not horrific, but there.  It was the constant being there, more than the degree of neuropathy (not totally toast on usuing fingers and can still use them, though some detailed things, like putting camera strap on camera, takes more time) which said to him "Done with Ox."

  • annalexandria
    annalexandria Member Posts: 2,571 Member
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    Wouldn't a three month session be awesome by comparison?

    I really hope those studies pan out.

    My doc said that the ox adds about 5% to prognosis rates, but I was left with long-term neuropathy from the stuff so wish he would have been more proactive about monitoring my side effects.  Sounds like yours is on top of things, which is great!

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
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    better or best

    There are several missing pieces here.  The likellihood of metastasis and future recurrance are often reflected in pre-op/pre-rad CEA, CA199 and LDH.  ESR, hsCRP would help evaluate CA19-9 and CEA even better.  An initial baseline CA72-4, AFP, CA125,  quantitative D-dimer survey of markers would also add information and help catch a few future surprises earlier. 

    Where the odds show it e.g. CEA+CA19-9, longer term maintenance with 5FU, PSK and cimetidine or celebrex is likely key.  It is unfortunate that daily UFT (an oral generic Asian 5FU derivative drug) is not available in the US, because metronomic UFT-LV has several advantages to Xeloda. IMO, if UFT were available in the US, we could still have a lot less neuropathy and disabiity after 4-6-8 folfox tx  and yet, get better results for those who recur or have neuropathies now.

  • sflgirl
    sflgirl Member Posts: 220 Member
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    NewHere said:

    It seems to add percentage points

    The way my Onc explained it, and from some things I read, the extra percentage points for kicking the C out.  The stats was (for me, Staging and lymph nodes) that 55%-60% chance of it coming back/mets.  With chemo it goes to 25%-30%.  I get a couple of percentage points for being in good health.  A couple of more for an aspirin a day during chemo.  A couple of more for exercising.  All adding a bit.  The Oxi adds points, but the increment (in my Onc's mind based on things read) is the trying to get between 7-9 is the target, with 9 the high end and he won't do more.  The increment of the Ox assist at that point is slowing down and outweighs the risk.

    The neuopathy is something he feels snowballs, and not a linear thing.  Two sessions ago it started, progressed a bit, but always had down time/breaks of hours on end.  The last session not so much, but close to constant.  Not horrific, but there.  It was the constant being there, more than the degree of neuropathy (not totally toast on usuing fingers and can still use them, though some detailed things, like putting camera strap on camera, takes more time) which said to him "Done with Ox."

    Mixed feelings

    So I was interested and glad to read this string.  I really want to stop Ox.  My ninth round on folfoxiri + Avastin is coming up Thursday.  For the first sessions the side effects of Ox went away but after this last time they haven't.  Still have cold sensitivity and tingly fingers.  I'm stage 4 with colon and liver resections.  CEA currently 2.0, scan coming up next month.

    So I'm torn, does adding 5% potentially to prevent a recurrence out weigh the potential for lifelong neuropathy (however long it might be).  

    Im leaning toward taking the Ox next week on the 9th round and then stopping.  Would love to hear anyone else's opinion.

    Newhere, do you feel confident about your decision to stop?

    Thanks all.

    Andrea

  • Steve444
    Steve444 Member Posts: 105 Member
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    sflgirl said:

    Mixed feelings

    So I was interested and glad to read this string.  I really want to stop Ox.  My ninth round on folfoxiri + Avastin is coming up Thursday.  For the first sessions the side effects of Ox went away but after this last time they haven't.  Still have cold sensitivity and tingly fingers.  I'm stage 4 with colon and liver resections.  CEA currently 2.0, scan coming up next month.

    So I'm torn, does adding 5% potentially to prevent a recurrence out weigh the potential for lifelong neuropathy (however long it might be).  

    Im leaning toward taking the Ox next week on the 9th round and then stopping.  Would love to hear anyone else's opinion.

    Newhere, do you feel confident about your decision to stop?

    Thanks all.

    Andrea

    Hands

    They seem to want to stop it when the numbness persists in the fingers/hands.  For me, it was after 10 or so treatments.  It has been 10-11 months since stopping and most of the side effects have subsided.  I still have numbness in my toes and parts of the feet, but my fingers seem oK.  My stuttering has stopped except for when I'm really tired, the balance issues only crop up also when tired.  I'm still extremely fatigued, spend much of my time laying down and get tired after little exertion, but it's hard to blame that on something specific (it's more likely tied to my liver health dwindling and recent radiation than being left over from Ox).  tumors showed up in scans a few months ago, so I also can't speak to a specific number of treatments being tied to success.  I sure did feel good stopping at the time and am very happy my fingers are no longer numb.  :)

  • annalexandria
    annalexandria Member Posts: 2,571 Member
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    sflgirl said:

    Mixed feelings

    So I was interested and glad to read this string.  I really want to stop Ox.  My ninth round on folfoxiri + Avastin is coming up Thursday.  For the first sessions the side effects of Ox went away but after this last time they haven't.  Still have cold sensitivity and tingly fingers.  I'm stage 4 with colon and liver resections.  CEA currently 2.0, scan coming up next month.

    So I'm torn, does adding 5% potentially to prevent a recurrence out weigh the potential for lifelong neuropathy (however long it might be).  

    Im leaning toward taking the Ox next week on the 9th round and then stopping.  Would love to hear anyone else's opinion.

    Newhere, do you feel confident about your decision to stop?

    Thanks all.

    Andrea

    I believe the 5% is for the entire course,

    and my doc felt that dropping the last few rounds wouldn't change this all that much.  I think cutting it out as soon as it starts lasting the entire session without let up would be smart, but that's just my opinion.  I wished I would have dropped it sooner than I did, as I'm five years out and still struggling with neuropathy.

  • sflgirl
    sflgirl Member Posts: 220 Member
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    Steve444 said:

    Hands

    They seem to want to stop it when the numbness persists in the fingers/hands.  For me, it was after 10 or so treatments.  It has been 10-11 months since stopping and most of the side effects have subsided.  I still have numbness in my toes and parts of the feet, but my fingers seem oK.  My stuttering has stopped except for when I'm really tired, the balance issues only crop up also when tired.  I'm still extremely fatigued, spend much of my time laying down and get tired after little exertion, but it's hard to blame that on something specific (it's more likely tied to my liver health dwindling and recent radiation than being left over from Ox).  tumors showed up in scans a few months ago, so I also can't speak to a specific number of treatments being tied to success.  I sure did feel good stopping at the time and am very happy my fingers are no longer numb.  :)

    Nice to see you here

    Always appreciate your input.  Hope you are doing well.

    Best,

    Andrea

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    I had nine

    it didn't save me from bad neuropathy. 

    I hope that yours has been caught early enough, that the neuropathy is short lived. 

    Youre really on the countdown now. Soon, it will just be a memory to learn from and look back on. 

    Sue - Trubrit

  • NewHere
    NewHere Member Posts: 1,427 Member
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    Trubrit said:

    I had nine

    it didn't save me from bad neuropathy. 

    I hope that yours has been caught early enough, that the neuropathy is short lived. 

    Youre really on the countdown now. Soon, it will just be a memory to learn from and look back on. 

    Sue - Trubrit

    This One Hit Me More

    The neuropathy is increasing (though no OX this time), but Dr said it could increase for about a month still.   For some reason the tired REALLY got me this time.  Got disconnected Saturday, and just woke up today basically.  Was up for maybe an hour and a half out of the last 32 hours or so.  Weird, but they said the lack of Ox would help with tired.  Not sure if the steroid mix or something got changed, did not have this the last 3-4 sessions I think.  Also had chemo taste today, urgh.  

    And the countdown/finish line is in sight.  Only two more left.  Most of this has been relagted to a memory already.  Part of me forever and will do my best to help those who come down this path...

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    NewHere said:

    This One Hit Me More

    The neuropathy is increasing (though no OX this time), but Dr said it could increase for about a month still.   For some reason the tired REALLY got me this time.  Got disconnected Saturday, and just woke up today basically.  Was up for maybe an hour and a half out of the last 32 hours or so.  Weird, but they said the lack of Ox would help with tired.  Not sure if the steroid mix or something got changed, did not have this the last 3-4 sessions I think.  Also had chemo taste today, urgh.  

    And the countdown/finish line is in sight.  Only two more left.  Most of this has been relagted to a memory already.  Part of me forever and will do my best to help those who come down this path...

    Interesting

    My neuropathy didn't get bad until I was out of the OXY and into Radiation and a six week, 24 hour a day hook up to 5FU.  My Oncologist told me that it wasn't the 5FU that caused it, but I am not totally convinced. 

    Here is a picture taken when it was the worst in my hands (its a grab from a video, so not very flattering as far as my bald head is concerned).

    My feet, well, they still haven't recovered. 

    image

     

  • Dazza
    Dazza Member Posts: 1
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    Trubrit said:

    Interesting

    My neuropathy didn't get bad until I was out of the OXY and into Radiation and a six week, 24 hour a day hook up to 5FU.  My Oncologist told me that it wasn't the 5FU that caused it, but I am not totally convinced. 

    Here is a picture taken when it was the worst in my hands (its a grab from a video, so not very flattering as far as my bald head is concerned).

    My feet, well, they still haven't recovered. 

    image

     

    Time over again

    I had Folfox suite 5 years ago and my PN is mind

    Blowinglly debilitating.

    hands and feet 24/7 pain.

    i was never told about PN at anytime prior to or during my 6 months treatment.

    IF I had been told of this nightmare I would not have had it. 

    i would trade the 5 years they said it MAY add to my life for this to end.

    Absolutely criminal that they can keep poisoning people with this rubbish.

    Sorry, had to get that off my chest.

     

  • sflgirl
    sflgirl Member Posts: 220 Member
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    I believe the 5% is for the entire course,

    and my doc felt that dropping the last few rounds wouldn't change this all that much.  I think cutting it out as soon as it starts lasting the entire session without let up would be smart, but that's just my opinion.  I wished I would have dropped it sooner than I did, as I'm five years out and still struggling with neuropathy.

    Thanks everyone

    I had ninth round today. Talked to my onc about the 5% incremental benefit and they agreed.  So I had a reduced Oxalipltin today and will not get it rounds 10-12.   I appreciate all your insights and experiences.   Don't want to suffer needlessly while we're trying to get on with living.  You guys rock.

    Best,

    Andrea

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
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    Had Folfox Jan. 08, 5fu+Ox,

    Had Folfox Jan. 08, 5fu+Ox, had neuropathy for little over a year, symptoms fading to nil with time. Two reoccurances in the liver with surgery, but the onc said once was all I should have the Folfox, said it works or it doesn't, and he didn't want the neuropathy to become permanent. If it pops up in a bad, inoperable spot, I guess the choice comes up again.  Godd luck with yours

  • pluckey
    pluckey Member Posts: 484 Member
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    I M IN AWE OF HOW MANY ROUNDS

    I M IN AWE OF HOW MANY ROUNDS YOU ALL HAVE ENDURED.   i AONLY MADE THRU 4 ROUNDS. OXCILIPLATEN DID ME IN

     

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
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    pluckey said:

    I M IN AWE OF HOW MANY ROUNDS

    I M IN AWE OF HOW MANY ROUNDS YOU ALL HAVE ENDURED.   i AONLY MADE THRU 4 ROUNDS. OXCILIPLATEN DID ME IN

     

    I did 12 rounds of Oxalplatin

    I did 12 rounds of Oxalplatin 10 years ago. My hands are fine but have permenant nueropathy on the bottom of my feet. Most of the time I don't even notice. I think I just learned to live with it after all of these years. It is a nuesence to me more than anything.

  • John212
    John212 Member Posts: 116 Member
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    About that 3-month FOLFOX study

    Before I began my chemo, I was offered the chance to participate in a study that was comparing results for 6 rounds of FOLFOX versus 12 rounds. As I recall, the drug regimen in the study also included a medication that is not usually a part of the FOLFOX method. I read all the preliminary study results papers before making my decision and it's pretty clear that a 6-round method might be as effective as the current one that's 12 rounds. Still, I opted for the standard 12-round method out of a desire to take the conservative approach.

    Imagine my chagrin when the Oxaliplatin caused a horrific reaction in the middle of treatment #7. For a good while as I was being treated with high-dosage Benadryl for my body's reaction to the Oxy all I could think of was that decision to opt out of the 6-round study. Still, there was a 50% chance that I might have been placed in the 12-round arm of the study anyway, and that helped me erase those regrets.

    I still fight my neuropathy, and it's very clearly related to the oxaliplatin, but I think in the end it's better to enjoy the life I have than spend my hours pissed off at a life I won't ever have anyway.

  • NewHere
    NewHere Member Posts: 1,427 Member
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    Trubrit said:

    Interesting

    My neuropathy didn't get bad until I was out of the OXY and into Radiation and a six week, 24 hour a day hook up to 5FU.  My Oncologist told me that it wasn't the 5FU that caused it, but I am not totally convinced. 

    Here is a picture taken when it was the worst in my hands (its a grab from a video, so not very flattering as far as my bald head is concerned).

    My feet, well, they still haven't recovered. 

    image

     

    You Rock Sue/Tru

    I had some of that happening where my hands changed color and looked waxy, but overall I am the poster boy for getting each thing, but none lasting or out of control.  The big ones are tired and some neuropathy.  Increasing a bit since I have not had the Ox since treatment #9 and got disconnected from #11.  So at least 3 weeks.  But the Onc said that it could still build for up to a month.  Just hoping it starts decreasing.  Plus naps aren't bad ;)

    It is funny, but sometimes I feel like one of those "fakers" or guilty in that I have been doing pretty well.  I had it in 11 lymph nodes and it went through to the abdominal wall.  But I see how fortunate I have been overall and cannot help but admire and have utmost respect to everyone.  I am not sure I have that stength, though before my diangnosis I am not sure I would have said I would have had it to gone through what I have.  On the last hook-up I saw someone, maybe 25 or less, and another person with the bandana and obviously extremely frail and felt so weird. Angry for them.  And partly, with my stuborness, empathy, whatever words, of feeling guilty that I am someone with cancer.  I guess what I am trying to describe in this paragraph is kind of hard to describe.  

    I told my wife last night that one of my wishes is that anyone who ever has to get chemo on their worst day has the experience I have been through.