liver health - keep drugs to minimum required

pete43lost_at_sea
pete43lost_at_sea Member Posts: 3,900 Member
in Colorectal Cancer #1
this is only my understanding and I have no real medical knowledge except I am applying my limited knowledge to my own treatment with help from lots of different practicioners and informtion sources like this forum.

So the first book I read after DX was on liver health, I was really lucky.

It has shaped everything I do.

the less toxins and waste products in our blood stream the better for our liver and my life. My goal as been to make it through the

its job is to get rid of all the by products of chemo asap.

so far my ONC is not focused on my liver health, so I have to be.

My ONC treatment to comabt diarrhea while on folfox6 chemo with an ileostomy is 2 x gastow stop and 2 x panadiene forte ( contains 500mg paracetamol and 30mg codiene phosphate ) for each very watery bag full. Maximum 4 sets per day, which would be the daily max panadience forte of 8 tablets.

The point is my onc could write a script for just the codiene only, keeping all that paracetamol out of my blood supply, but she did not think it necessary. maybe just an oversight. I will be seeing her Monday and look forward to raising this point for improvement. I would avoid heaps of potential issues of being dopped up on paracetamol as well. And I know the difference between the folfox6 and paracetamol may seem insignificant but its the livers ability to function under the chemo load that my phd blood researcher friend explained as follows

"a liver in peak health, can process a large amount of toxins very effectively whereas as average health liver struggles and does not bounce back straight away"

My healthy diet has also been about making the livers job as easy as possible.

Just a few thoughts... would appreciate some feedback

Pete

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #3
    unknown said:

    This comment has been removed by the Moderator

    thanks gracie
    I guess my onc just wanted to use the medication she thought best for me.

    As I understand it, putting the bowel to sleep must be the effect the onc is after with the codeine and then the gastow stop. I have not really got into researching what all the drugs I get prescribe do and how they do it. Maybe its getting to that stage.

    I just see the irony that I try and stop eating junk to be as healthy as possible while putting extra drugs in my case paracentamol

    When I was told to use the panadeine forte and gastrow stop for the diarrhea I never questioned the onc. I'll ask her about other antidiarrheals.

    thanks,

    Pete
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #4
    pete43lost_at_sea said:

    thanks gracie
    I guess my onc just wanted to use the medication she thought best for me.

    As I understand it, putting the bowel to sleep must be the effect the onc is after with the codeine and then the gastow stop. I have not really got into researching what all the drugs I get prescribe do and how they do it. Maybe its getting to that stage.

    I just see the irony that I try and stop eating junk to be as healthy as possible while putting extra drugs in my case paracentamol

    When I was told to use the panadeine forte and gastrow stop for the diarrhea I never questioned the onc. I'll ask her about other antidiarrheals.

    thanks,

    Pete

    Pete,
    The most important part of that post:

    "I have no real medical knowledge".

    Now, what you are referring to is known in the U.S. as acetaminophen, or the brand name Tylenol. Once considered a stomach safe alternative to aspirin, it became the "filler" of choice for many prescription opioids, as well as many OTC products like cough suppressants.  In the last decade it became apparent that many were experiencing liver damage, because they were unknowingly taking several times the recommended safe dosage by using more than one product which contained acetaminophen.  Currently, there is a debate in the American medical community arguing for a full ban, as there seems to be no practical way to control the OTC dosage, and many patients are getting script from multiple doctors, which can lead to the same issue.

    Codeine is highly addictive, and sets off the Dr's internal alarms when it is asked for directly.  However, we are cancer patients, granting us a number of special privileges.

    For my pain, I am taking Oxy-Morphone, and it does a pretty good job of stopping me up, it also contains no acetaminophen.  You should have alternatives if you are concerned, and your doc should be willing to discuss them.

    To be clear, none of what I posted should be taken as medical advice ;)

    Wishing you luck and better health.

    Your friend,

    Blake
  • Unknown
    Unknown
    #5
    Buckwirth said:

    Pete,
    The most important part of that post:

    "I have no real medical knowledge".

    Now, what you are referring to is known in the U.S. as acetaminophen, or the brand name Tylenol. Once considered a stomach safe alternative to aspirin, it became the "filler" of choice for many prescription opioids, as well as many OTC products like cough suppressants.  In the last decade it became apparent that many were experiencing liver damage, because they were unknowingly taking several times the recommended safe dosage by using more than one product which contained acetaminophen.  Currently, there is a debate in the American medical community arguing for a full ban, as there seems to be no practical way to control the OTC dosage, and many patients are getting script from multiple doctors, which can lead to the same issue.

    Codeine is highly addictive, and sets off the Dr's internal alarms when it is asked for directly.  However, we are cancer patients, granting us a number of special privileges.

    For my pain, I am taking Oxy-Morphone, and it does a pretty good job of stopping me up, it also contains no acetaminophen.  You should have alternatives if you are concerned, and your doc should be willing to discuss them.

    To be clear, none of what I posted should be taken as medical advice ;)

    Wishing you luck and better health.

    Your friend,

    Blake

    This comment has been removed by the Moderator
  • hopeforcure49
    hopeforcure49 Member Posts: 111
    #6
    OMG!
    OMG Pete! You were taking 4000mg of tylenol a day? Glad you are getting informed. Keep us informed too. I stopped taking tylenol and OTC meds. My onc. prescribed extended release morphine tabs. I used to take it in am and in pm for rectal pain. But after my liver resection I noticed that discomfort subsided and so I stopped taking it all together. I still get an occasional spasms and discomfort in my rectal area. But it passes, I try to distract myself from it. and it works. But my colorectal surgeon told me this is normal the bowels and rectum are doing its job trying to function again. I hope soon I can have this ileostomy reversed. But I have to wait til I'm done with the chemo. And a healthy diet is the secret to detoxing the liver. some foods more than others. Glad to hear that you are doing all this....Blessings Lourdes
  • lmliess
    lmliess Member Posts: 329
    #7
    hopeforcure49 said:

    OMG!
    OMG Pete! You were taking 4000mg of tylenol a day? Glad you are getting informed. Keep us informed too. I stopped taking tylenol and OTC meds. My onc. prescribed extended release morphine tabs. I used to take it in am and in pm for rectal pain. But after my liver resection I noticed that discomfort subsided and so I stopped taking it all together. I still get an occasional spasms and discomfort in my rectal area. But it passes, I try to distract myself from it. and it works. But my colorectal surgeon told me this is normal the bowels and rectum are doing its job trying to function again. I hope soon I can have this ileostomy reversed. But I have to wait til I'm done with the chemo. And a healthy diet is the secret to detoxing the liver. some foods more than others. Glad to hear that you are doing all this....Blessings Lourdes

    Naturalpath big on liver too
    My natural path is big on keeping my liver in top shape too. She has me taking wheatgrass, blue green algea, and chlorella to detox my blood and take the load off the liver.
  • TMac52
    TMac52 Member Posts: 352
    #8
    Chemo on the liver scares the hell out of me!!
    Hey Pete, I hear ya!!!
    I just had this conversation with my ONC Monday before dose #5. I am very concerned he said he checks my liver health via blood test every two weeks and all is normal??? But I dont trust it. Don't know what else to do tho??
    Tom
  • Unknown
    Unknown
    #9
    TMac52 said:

    Chemo on the liver scares the hell out of me!!
    Hey Pete, I hear ya!!!
    I just had this conversation with my ONC Monday before dose #5. I am very concerned he said he checks my liver health via blood test every two weeks and all is normal??? But I dont trust it. Don't know what else to do tho??
    Tom

    This comment has been removed by the Moderator
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #10
    TMac52 said:

    Chemo on the liver scares the hell out of me!!
    Hey Pete, I hear ya!!!
    I just had this conversation with my ONC Monday before dose #5. I am very concerned he said he checks my liver health via blood test every two weeks and all is normal??? But I dont trust it. Don't know what else to do tho??
    Tom

    thanks tom
    Hi Tom,

    like us all I suppose we want to complete the folfox6 course.
    I am going to reread my liver book, a few chapters anyway.

    Our livers maybe classed as normal, but is that peak health ?

    My experience so far is that my ONC is focused on chemo and the drugs around it.
    And the specific side effects. she was really worried about me chronic diarrhea and probably recommended a heavy approach to it to minimise the significant headaches with being admitted to er for dehydration ( been their once serious, once preventitive )

    All I am doing is about being as healthy as possible and making the best decisions I can as I go on this journey and learn heaps from my friends everywhere.

    I was warned about the excess paracetamol when I attended a bowel cancer support group whose moderator happens to be a biochemist and she knows alot about bowel cancer. She was against juicing. She on one hand I gave helpful information re my medications and then on the other hand told me that vegetable juicing is a waste and excessive and just to eat a balanced healthy diet. I am used to having my particular journey being adapted along the way as I learn more and accept strategies I had never heard of or contemplated.

    All I can do is ask, listen and learn and then follow my gut.
    Pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #11
    TMac52 said:

    Chemo on the liver scares the hell out of me!!
    Hey Pete, I hear ya!!!
    I just had this conversation with my ONC Monday before dose #5. I am very concerned he said he checks my liver health via blood test every two weeks and all is normal??? But I dont trust it. Don't know what else to do tho??
    Tom

    thanks tom
    Hi Tom,

    like us all I suppose we want to complete the folfox6 course.
    I am going to reread my liver book, a few chapters anyway.

    Our livers maybe classed as normal, but is that peak health ?

    My experience so far is that my ONC is focused on chemo and the drugs around it.
    And the specific side effects. she was really worried about me chronic diarrhea and probably recommended a heavy approach to it to minimise the significant headaches with being admitted to er for dehydration ( been their once serious, once preventitive )

    All I am doing is about being as healthy as possible and making the best decisions I can as I go on this journey and learn heaps from my friends everywhere.

    I was warned about the excess paracetamol when I attended a bowel cancer support group whose moderator happens to be a biochemist and she knows alot about bowel cancer. She was against juicing. She on one hand I gave helpful information re my medications and then on the other hand told me that vegetable juicing is a waste and excessive and just to eat a balanced healthy diet. I am used to having my particular journey being adapted along the way as I learn more and accept strategies I had never heard of or contemplated.

    All I can do is ask, listen and learn and then follow my gut.
    Pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #12
    lmliess said:

    Naturalpath big on liver too
    My natural path is big on keeping my liver in top shape too. She has me taking wheatgrass, blue green algea, and chlorella to detox my blood and take the load off the liver.

    thanks lmliess, lourdes, blake and grace
    I appreciate your comments and note no medical advice has been given.

    thanks heaps,
    Pete
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #13
    Pete
    So, based on the Irenotecan thread , your doc never mentioned possible liver damage, and it was all new news to you.

    Based on this thread, you have been thinking about this for months.

    Did you even bother to ask him? Or your ND? Or your TCM doc?
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #14
    Buckwirth said:

    Pete
    So, based on the Irenotecan thread , your doc never mentioned possible liver damage, and it was all new news to you.

    Based on this thread, you have been thinking about this for months.

    Did you even bother to ask him? Or your ND? Or your TCM doc?

    Blake
    hi Blake,

    the short answer is no, my onc never mentioned liver damage that i can remember. i did get the list a of folfox side effects as a take away and read this at the very start.

    my bloods were almost always normal, or so close to normal they were going to only test every second chemo round. except this made the oncnurses nervous. except now for the last test my bloods are at there worst, still not to bad.

    the day i was dx i called my phd blood bank research friend, he advised beetroot juice and milk thistle. that was the beginning of my alternative learning. before meeting surgeons, before onc. i think i started detoxing my liver the next day with milk thistle. i have not stopped mik thistle except for chemo infusion days. so i have been well advised before this forum, been aware of my liver since the first day.

    the precise nature and damage on my liver due to folfox i am still researching.

    i mentioned to my onc i am on milk thistle, i am trying to keep my liver healthy,my ND and TCM doc both have blood tests. my ND focus was my gut and now peripheral neuropathy. she question the 17000mg of milk thistle i am having.

    i never asked about oxali and liver damage permanent or otherwise. and my onc never said well 10% of folfox patients have a moderate degree of liver dysfunction. no i would have remembered that or something similar. you can bet i would have raised it here.
  • SisterSledge
    SisterSledge Member Posts: 332 Member
    #15
    Buckwirth said:

    Pete
    So, based on the Irenotecan thread , your doc never mentioned possible liver damage, and it was all new news to you.

    Based on this thread, you have been thinking about this for months.

    Did you even bother to ask him? Or your ND? Or your TCM doc?

    Pit bull
    Blake, you're just not gonna let go are ya? There's a difference between being worried about liver issues in general and worrying about something specific you've recently been introduced to...how about pulling those teeth outta Pete's neck now? Really, I respect your knowledge and caring so much, but it feels like you're just being mean.
  • scouty
    scouty Member Posts: 1,965 Member
    #16
    Buckwirth said:

    Pete
    So, based on the Irenotecan thread , your doc never mentioned possible liver damage, and it was all new news to you.

    Based on this thread, you have been thinking about this for months.

    Did you even bother to ask him? Or your ND? Or your TCM doc?

    I flagged your post Blake
    I wanted you to know who did it and why. I found it to be hateful and mean spirited. It feels like you are stalking and harassing Pete and goes along with your small digs at others that do complimentary/alternative things. I've had enough.

    If you can't say anything nice, DON'T say anything at all!!!!

    Lisa P.
  • abrub
    abrub Member Posts: 2,174 Member
    #17
    unknown said:

    This comment has been removed by the Moderator

    A friend who is an ER doc
    told me that she sees lots of addicts who come in because they are severely constipated.

    Yes, colace and/or senna should be taken with the narcotic pain meds to avoid constipation. I now make sure I take at least some colace on those occasions that I have to turn to hydrocodone or oxycodone. And I've known for a while about liver damage and acetaminophen, such that if I try to control pain with OTC treatments (including Tylenol) and I need more, I turn to Oxycodone, which is not combined with acetamiophen. If pain is enough that I know I'll need narcotics, I prefer hydrocodone, but will only take that if I haven't had Tylenol in the prior 6-8 hours.

    I've educated myself on what can be mixed and matched, and am very careful in how I use meds.

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