End of OXA

Real Tar Heel
Real Tar Heel Member Posts: 297 Member

With three FOLFOX treatments left, tonight was the last Oxaliplatin I'll receive (hopefully, unless one bugger returns). I told my doc I didn't want to have it anymore and she agreed (various reasons, persistent numbess even though not very debilitating and the years of life I have left, a lot!) I make my living by typing and well I can't afford to be without the skill, I can't afford the Steven Hawkings' style headset.

My question to those who have stopped OXA part of the way through, what was it like? Did the symptoms go on and on as one might expect from cumulative mini-poison being dropped into your bloodstream? Did they slowly dissapate? Did the abscence of OXA reveal any new symptoms?

I'm still on the 5-FU pump right now but I do feel differently than I've felt at this stage before. I do notice a change, but I don't know if it's because of less OXA or just the vagueries of being a cancer patient.

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Comments

  • NewHere
    NewHere Member Posts: 1,393 Member
    I had 8

    My oncologist never used more than 10 in 12 treatments due to the risk of neuropathy way out risked the possible benefit of the extra cancer prevention.  My first treatment was without, then had 8.  They stopped when my neuorpathy did not fully resolved between treatments, they said it was more like failing off a cliff as oppossed to linear when it happens, so bagged it.

    That was 2015.  I still have the neuropathy.  It was bad for the first three months after, playing guitar was like having novacaine in my fingers and a no go.  It progressively got better, though never fully resolved, though two years out the was a day where pretty much overnight had a big improvement.

    For some things it can rear its head, sometimes on fine motor skils with the fingers.  But otherwise totally managable and I am guessing should not stop you from typing like you need to.  Also in my feet still, with occasional flare ups where it is worse.

    Also, just an FYI, you will many not be put back on Oxailiplatin even if it comes back - usually going back to the same treatment will not be as effective (of course this varies) and if you are experiencing symptoms now from it, putting you back on it is not starting from zero usually.  It will come on quicker and more pronounced.  Note I said usually.  I try to avoid saying anything absolute in this whole cancer things and people will have different experiences.  (I have recently stopped FOLFORI because it stopped working and they will not put me back on FOLFOX. )

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Oxi

    Oxi gave me permanent neuropathy with both hands and feet being affected.  I'm on medication everyday which helps, and it doesn't stop me from typing.  It's just a real bother, numbness wise, if I've forgotten my pills, or in cold weather.  If your symptoms haven't gotten better, it's best to stop it as it usually gets worse.  Everyone is different though, so you could end up with no symptoms at all. 

    Kim

  • AnneO1965
    AnneO1965 Member Posts: 182
    I also have permanent

    I also have permanent neuropathy in both hands and feet. Also my legs, right up to below my knee. It's affected my balance, but at least I can still walk. I sometimes need to use a cane just so that I feel stable enough to walk. Better hope I never get pulled over and given a field sobriety test, I will fail for sure!

    If I don't take my medication or if it gets really cold, I can't feel that I have feet. Weird sensation.

  • Trubrit
    Trubrit Member Posts: 5,643 Member
    Me too

    In fact, as I type I have to be careful, as mornings are the worst, and my fingers are totally numb.  It eases up during the day.

    My feet on the other hand are effected every day. Worse if I have allot of sugar or salt.  Numb from the toes up to middle calf.  

    I will never be put back on Oxi, and would not want to.   And, I am almost six years out, so there's a goal for you. 

    Tru

  • zx10guy
    zx10guy Member Posts: 273
    If it helps you feel better,

    If it helps you feel better, Oxali only provides a few percentage points of benefit above 5FU alone.  It's something but not hugely significant in the grand scheme of things.  So stopping Oxali due to side effects should be more prudent than the potential benefits.  Look at it another way, there's been some changes in treatment protocol where many docs think 6 treatments of FOLFOX6 is as beneficial as 12 treatments.  There have been clinical trials to look at the data concerning overall survivability and disease free recurrence.  The goal of the change is to reduce the toxicity the patients go through unnecessarily.  Another thing I'm thinking which in passing is what the reduction of treatment cycles is looking to do is the chances of any adaptation/mutation of residual cancer cells to FOLFOX treatment.  This is why a particular person's tumors start to be resistant to specific drugs over time and drugs have to be rotated to maintain treatment effectiveness.

    For myself, I went through 12 FOLFOX6 treatments with only the 11th session having Oxali removed due to lingering side effects.  The side effects resolved before my 12th treatment date so I opted to do the last one with Oxali back in.  I too make a living based on touch typing and found it very difficult to do so while under treatment.  Thankfully, my touch typing abilities have returned to normal.  What hasn't come back is my fine motor skills with my finger tips along with lingering tingling/slight numbness in my feet.  I only notice my feet when I think about it.  Other times I don't notice it as I've gotten used to the situation.  If it were any worse, it would jeopardize one of my hobbies which is riding motorcycles.  And to give you a gauge, I'm almost 7 years out from my last FOLFOX treatment.

    Neuropathy is heavy metal damage from the platinum metal in the Oxali drug.  Heavy metals such as platinum attack nerve endings.  So when you feel numbness and such, it's damage that has occurred to those nerve endings.  If left unchecked, the damage progresses further into the nerve.  The nerves can regenerate over time.  It's a slow process and some times permanent depending on the amount of damage.  Upon reporting symptoms, your doc should have adjusted the dosage of Oxali.  Mine did.  And if the adjustment still results in lingering side effects, that's when the decision is made on termination of that part of the treatment.

  • Real Tar Heel
    Real Tar Heel Member Posts: 297 Member
    AnneO1965 said:

    I also have permanent

    I also have permanent neuropathy in both hands and feet. Also my legs, right up to below my knee. It's affected my balance, but at least I can still walk. I sometimes need to use a cane just so that I feel stable enough to walk. Better hope I never get pulled over and given a field sobriety test, I will fail for sure!

    If I don't take my medication or if it gets really cold, I can't feel that I have feet. Weird sensation.

    LOL @ the sobriety test, I

    LOL @ the sobriety test, I almost failed one because I'm basically clumsy thought I'm supposed to be a good athlete

  • Real Tar Heel
    Real Tar Heel Member Posts: 297 Member
    NewHere said:

    I had 8

    My oncologist never used more than 10 in 12 treatments due to the risk of neuropathy way out risked the possible benefit of the extra cancer prevention.  My first treatment was without, then had 8.  They stopped when my neuorpathy did not fully resolved between treatments, they said it was more like failing off a cliff as oppossed to linear when it happens, so bagged it.

    That was 2015.  I still have the neuropathy.  It was bad for the first three months after, playing guitar was like having novacaine in my fingers and a no go.  It progressively got better, though never fully resolved, though two years out the was a day where pretty much overnight had a big improvement.

    For some things it can rear its head, sometimes on fine motor skils with the fingers.  But otherwise totally managable and I am guessing should not stop you from typing like you need to.  Also in my feet still, with occasional flare ups where it is worse.

    Also, just an FYI, you will many not be put back on Oxailiplatin even if it comes back - usually going back to the same treatment will not be as effective (of course this varies) and if you are experiencing symptoms now from it, putting you back on it is not starting from zero usually.  It will come on quicker and more pronounced.  Note I said usually.  I try to avoid saying anything absolute in this whole cancer things and people will have different experiences.  (I have recently stopped FOLFORI because it stopped working and they will not put me back on FOLFOX. )

    I play guitar, too, mostly

    I play guitar, too, mostly with my kids who have taken up instruments. I haven't played since the third week of treatments, and I was not sounding great, so maybe it was the OXA, yeah, I will keep telling myself that. The very tips of my fingers are the most sensitive right now. I think I will give it a test this afternoon to see how it feels. I can feel it while typing so I guess guitar is not going to feel great.

  • Real Tar Heel
    Real Tar Heel Member Posts: 297 Member

    Oxi

    Oxi gave me permanent neuropathy with both hands and feet being affected.  I'm on medication everyday which helps, and it doesn't stop me from typing.  It's just a real bother, numbness wise, if I've forgotten my pills, or in cold weather.  If your symptoms haven't gotten better, it's best to stop it as it usually gets worse.  Everyone is different though, so you could end up with no symptoms at all. 

    Kim

    Hmm, wow, permanent

    Hmm, wow, permanent neuropathy, I'm sorry. What medication are you on? Have you tried L-Glutamine? I heard that is supposed to do something... My docs haven't told me anything about treatments.

  • Real Tar Heel
    Real Tar Heel Member Posts: 297 Member
    Trubrit said:

    Me too

    In fact, as I type I have to be careful, as mornings are the worst, and my fingers are totally numb.  It eases up during the day.

    My feet on the other hand are effected every day. Worse if I have allot of sugar or salt.  Numb from the toes up to middle calf.  

    I will never be put back on Oxi, and would not want to.   And, I am almost six years out, so there's a goal for you. 

    Tru

    Thanks

    Thanks

  • NewHere
    NewHere Member Posts: 1,393 Member

    LOL @ the sobriety test, I

    LOL @ the sobriety test, I almost failed one because I'm basically clumsy thought I'm supposed to be a good athlete

    Yup On The Sobriety Test

    The stress of being pulled over, without having anything to drink, would probably cause me to fail a sobreity test.  Add to that my inherent clumsiness of probably not being able put one foot in front of the other, the chemo brain of trying to recite the alphabet backwards (plus the occasional times where my speech sounds funny from it)  and if I had a bad neuropathy day, they would lock me up and throw away the key.  Laughing

  • Real Tar Heel
    Real Tar Heel Member Posts: 297 Member
    zx10guy said:

    If it helps you feel better,

    If it helps you feel better, Oxali only provides a few percentage points of benefit above 5FU alone.  It's something but not hugely significant in the grand scheme of things.  So stopping Oxali due to side effects should be more prudent than the potential benefits.  Look at it another way, there's been some changes in treatment protocol where many docs think 6 treatments of FOLFOX6 is as beneficial as 12 treatments.  There have been clinical trials to look at the data concerning overall survivability and disease free recurrence.  The goal of the change is to reduce the toxicity the patients go through unnecessarily.  Another thing I'm thinking which in passing is what the reduction of treatment cycles is looking to do is the chances of any adaptation/mutation of residual cancer cells to FOLFOX treatment.  This is why a particular person's tumors start to be resistant to specific drugs over time and drugs have to be rotated to maintain treatment effectiveness.

    For myself, I went through 12 FOLFOX6 treatments with only the 11th session having Oxali removed due to lingering side effects.  The side effects resolved before my 12th treatment date so I opted to do the last one with Oxali back in.  I too make a living based on touch typing and found it very difficult to do so while under treatment.  Thankfully, my touch typing abilities have returned to normal.  What hasn't come back is my fine motor skills with my finger tips along with lingering tingling/slight numbness in my feet.  I only notice my feet when I think about it.  Other times I don't notice it as I've gotten used to the situation.  If it were any worse, it would jeopardize one of my hobbies which is riding motorcycles.  And to give you a gauge, I'm almost 7 years out from my last FOLFOX treatment.

    Neuropathy is heavy metal damage from the platinum metal in the Oxali drug.  Heavy metals such as platinum attack nerve endings.  So when you feel numbness and such, it's damage that has occurred to those nerve endings.  If left unchecked, the damage progresses further into the nerve.  The nerves can regenerate over time.  It's a slow process and some times permanent depending on the amount of damage.  Upon reporting symptoms, your doc should have adjusted the dosage of Oxali.  Mine did.  And if the adjustment still results in lingering side effects, that's when the decision is made on termination of that part of the treatment.

    That is sort of the decision

    That is sort of the decision I came to with my Onc, that stopping the OXA now would be best in the long term. She was thinking things could resolve within 6 mos to a year and that I may return to normal functions by that time since I haven't lost any motor skills (which I'm going to test with the guitar).

    I wish that I had done a little more research on each of the components of FOLFOX before starting. I'm Oligometastatic and MSS and apparently not only does OXA not help that much, neither does FOLFOX according to some studies. All the doctors were pretty much assuming that adjuvant therapy was absolutely the thing to do and they didn't talk about what it would be like NOT to have it.

  • Real Tar Heel
    Real Tar Heel Member Posts: 297 Member
    Thanks for all the responses.

    Thanks for all the responses. It does still hurt a bit to type but it seems I'll be feeling that way for a while. Aside from keeping up with work, my bigger concerns were about being able to stay moblle and avoiding other side effects associated with Oxa. I hope for other mCRC patients they find something other than injecting us with platinum.

  • zx10guy
    zx10guy Member Posts: 273

    That is sort of the decision

    That is sort of the decision I came to with my Onc, that stopping the OXA now would be best in the long term. She was thinking things could resolve within 6 mos to a year and that I may return to normal functions by that time since I haven't lost any motor skills (which I'm going to test with the guitar).

    I wish that I had done a little more research on each of the components of FOLFOX before starting. I'm Oligometastatic and MSS and apparently not only does OXA not help that much, neither does FOLFOX according to some studies. All the doctors were pretty much assuming that adjuvant therapy was absolutely the thing to do and they didn't talk about what it would be like NOT to have it.

    I didn't know you are dealing

    I didn't know you are dealing with metastatic sperad.  How come you're not on FOLFIRI?  That's typically the first line treatment for someone who is metastatic along with possibly adding in Avastin.  Do you know what your KRAS status is?  Wild or Mutant?  This will have a bearing if Erbitux is an option or not.  Also, being MSS makes you inelligible for approved immunotherapies.  Immunotherapy drugs currently approved and in use are only effective with MSI-High patients.  There have been work with trying to find a immunotherapy drug which will work on MSS patients of which the vast majority of CRC patients fall into this category.

    The one thing I've been saying to many people about being a cancer patient.  If you're even remotely interested in your care, cancer makes a doctor out of a patient.  I've learned way more than I would have ever because I'm a patient.  To the point where I examine my scan images.  While I'll be the first to say I'm not qualified.  I do have some knowledge from looking at scan images with my doctor to know generally what I'm looking for in the scans.

  • Real Tar Heel
    Real Tar Heel Member Posts: 297 Member
    zx10guy said:

    I didn't know you are dealing

    I didn't know you are dealing with metastatic sperad.  How come you're not on FOLFIRI?  That's typically the first line treatment for someone who is metastatic along with possibly adding in Avastin.  Do you know what your KRAS status is?  Wild or Mutant?  This will have a bearing if Erbitux is an option or not.  Also, being MSS makes you inelligible for approved immunotherapies.  Immunotherapy drugs currently approved and in use are only effective with MSI-High patients.  There have been work with trying to find a immunotherapy drug which will work on MSS patients of which the vast majority of CRC patients fall into this category.

    The one thing I've been saying to many people about being a cancer patient.  If you're even remotely interested in your care, cancer makes a doctor out of a patient.  I've learned way more than I would have ever because I'm a patient.  To the point where I examine my scan images.  While I'll be the first to say I'm not qualified.  I do have some knowledge from looking at scan images with my doctor to know generally what I'm looking for in the scans.

    Not on FOLFRI because I'm

    Not on FOLFRI because I'm getting the basic adjuvant therapy. My tumors were removed by resection and ablation, one from colon and one from liver. There have been no signs of further spread since then. Yes, MSS makes me ineligible for immunotherapies but that's a bridge I don't plan on having to cross. I mentioned MSS in the context of oligometastasis, some research has shown that chemo doesn't improve outcomes in such patients. That's fine because oligometastatic patients are in better shape than most and are candidates for a cure. It's kind of why I feel a little bad about complaining in here because comparing to most people I haven't had it that bad. I know oligometastatic patients are still stage IV but the OS is pretty good, maybe 60/40 for 5 years.

    I'm KRAS mutation positive, so no erbitux.

     

  • NewHere
    NewHere Member Posts: 1,393 Member

    Thanks for all the responses.

    Thanks for all the responses. It does still hurt a bit to type but it seems I'll be feeling that way for a while. Aside from keeping up with work, my bigger concerns were about being able to stay moblle and avoiding other side effects associated with Oxa. I hope for other mCRC patients they find something other than injecting us with platinum.

    On The MSS Issue

    Hopefully you will not have to look into this any further and you will be clear and NED.  But there are more and more trials out there for immunotherapy for MSS.  I was in one in 2018 (did not work and was a bit of a long shot going in) and tried to get into another this year.  They did human leukocyte antigen (HLA)  test which would indicate whether  I could possibly benefit from the approach they were looking out, but did not have the markers in the HLA they thought would indicate that I would respond to the trial.

  • Real Tar Heel
    Real Tar Heel Member Posts: 297 Member
    News on this front

    My PCP prescribed an anti-depressant drug to deal with neuropathy symptoms today. Seems excessive but let's see what happens.

  • Real Tar Heel
    Real Tar Heel Member Posts: 297 Member
    NewHere said:

    On The MSS Issue

    Hopefully you will not have to look into this any further and you will be clear and NED.  But there are more and more trials out there for immunotherapy for MSS.  I was in one in 2018 (did not work and was a bit of a long shot going in) and tried to get into another this year.  They did human leukocyte antigen (HLA)  test which would indicate whether  I could possibly benefit from the approach they were looking out, but did not have the markers in the HLA they thought would indicate that I would respond to the trial.

    Thanks. I'm sure that they'll

    Thanks. I'm sure that they'll find something useful too late for me, lol, that's my luck. For now, I'll just go with the flow. I'm optimistic because if a liver met returns to the site it is easy to reach with RFA, plus I've been sucking down all of this leucovorin and Oxa, lol

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member

    Hmm, wow, permanent

    Hmm, wow, permanent neuropathy, I'm sorry. What medication are you on? Have you tried L-Glutamine? I heard that is supposed to do something... My docs haven't told me anything about treatments.

    Medication

    I'm on Gabapentin, and have been taking it for 10 years.  It's now considered a controlled susbstance.  I've not tried anything else as this seems to take the edge off.

    Kim

  • AnneO1965
    AnneO1965 Member Posts: 182
    Cymbalta? that's what my PCP

    Cymbalta? that's what my PCP gave me along with gabapentin. Just curious as to what you were prescribed, so I can do a check in with my doc.

  • SnapDragon2
    SnapDragon2 Member Posts: 660 Member
    edited February 2020 #21
    Oxaliplatin (sp?) scares the

    Oxaliplatin (sp?) scares the crap out of me.  I will be following you to see how you are doing.  I start folfox Monday.