IV vit C #600, a road less traveled

tanstaafl
tanstaafl Member Posts: 1,313 Member
edited February 2016 in Colorectal Cancer #1

It is ca 4.7 yrs since wife's initial diagnosis, 4.6 yrs of IV vitamin C along with about her weight in supplements.  She's infused about 36,000,000 mg of vitamin C, about 80 pounds of the stuff, directly into her veins, not even counting the oral part.  This year, usually 30 (too low) - 65 grams per infusion, about every 4+ days, most often in the comfort of her own home. The previous IV C #500, post   Supplements in the final analysis are super concentrated nutrients of specific molecules, typical generalities are simply mistaken chemistry.  In our case she is slowly increasing the dehydroascorbate percent content for hopefully better cancer performance.   

My wife is in very good shape, better than most of her "normal health" friends.   She's doing extraordinarily well because the current literature  survival quotes for multi site mets with multiple para-aortic lymph nodes show zero survivors in less than 3.5 yrs for what were multi-line treatments through ~2008/9.  Those estimates were a little optimistic because some of the patient sample would have had better nodes, CEA and/or CA19-9 biomarkers than hers.  Of course, since then much more aggressive, longer Avastin regimens with even more salvage therapies have been supported by insurance, adding some months to conventional tx stats.  

All of her doctors rate her as their most  shockingly successful cancer patient.  While none of them completely agree with what we do, they do support us in the area of their expertise that we ask, with their candid opinion.  However, my wife has only directly talked to an oncologist once - the nicest one of six was still too negative. She would rather be experimental on my first try than promised toast, "[tans], you take care of it" as we walked out of that oncologist's office after 2 hrs. [Note: I do unusual, pragmatic, paid experiments IRL too -nonmedical]   If we don't like the stats or the biomarkers, we get on a different treatment curve.

Are vitamins bad for chemo?  Well, we think the right ones work just fine with 5FU compounds, even much better.   In fact if some of her supplements or vitamins get disrupted, bad things start happening with CEA, CA19-9 and other biomarkers.    She has had **very little** damage from oxaliplatin, irinotecan, avastin and erbitux, because, well, she hasn't had any.  She doesn't have the usual chemo side effects, except some 5FU chemo brain and stresses easier.  Any day, she can still play the piano after almost 4.5 years of daily chemo.

Thanks to Life Extension Foundation, for their colon cancer articles on cimetidine, celecoxib and a lot of her supplements.   Many thanks to Dr Abram Hoffer, 1917-2009; Dr Frederick Klenner, 1907-1984; Dr Robert Cathcart, 1932-2007; The Riordan Clinic;  Dr Thomas Levy (living) and Irwin Stone, 1907-1984 for their insights into vitamins and supplements, especially vitamin C that made this possible.       

IV vitamin C is not a standalone mCRC treatment, she is not cured. Rather she is stable with low residual burden not even truly NED, playing footsie with what I think are 1-2 small mets as yet unrecognized on scans.  However, IV C is one critical component in her overall cancer treatment, both surgeries and permanent chemo, with superior health and quality of life. It's taken careful combinations of IV vitamin C, nutrition and supplements, surgery and metronomic immunochemotherapy to stay in the game, to travel this journey first class and port free.   

 

Comments

  • manwithnoname
    manwithnoname Member Posts: 402
    #2
    wow! amazing.

    Funny, been pestering our HBO doc. to let us include it to no avail, no amount of research or anecdotes will move him (yet) we did go back on metformin (maybe every cancer patient should), intranasal curcumin is out but the results from it are outstanding on his memory, BDNF is the issue.

    $650.00 for one IV infusion here...

    Did you ever think to include K3 Tans?  I found a source in Oz.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #3
    manwithnoname said:

    wow! amazing.

    Funny, been pestering our HBO doc. to let us include it to no avail, no amount of research or anecdotes will move him (yet) we did go back on metformin (maybe every cancer patient should), intranasal curcumin is out but the results from it are outstanding on his memory, BDNF is the issue.

    $650.00 for one IV infusion here...

    Did you ever think to include K3 Tans?  I found a source in Oz.

    getting action and cost cutting

    Thanks Tony.  Oral K3 is incredibly cheap in asia, like $1.50 - 2 per 100 tablets of 5mg content since it is cheaper than vit K1 but removed from sale in industrialized countries because of neonatal contraindications.  K3 is part of the oral Apatone cancer treatment. We used to add ~50-90 mg K3 on infusion days but we prefer the MK4 version of oral K2 every day anyway for her particular tumor cells based on actual chemosensitivity testing of combinations and some bloodwork.    

    Our cost of regular, home based IV vit C infusion is much less than retail office medical, which is about $160-$225 in the US for 50-100 grams of ascorbate. When we disagree with doctors, I do more homework, try to find at least one doctor that is experienced and agreeable.  But as my wife tells them, my husband has final say.  Having been screwed over the years and now avoid being screwed with, we're into independence, usually capable of going it mostly alone. 

  • manwithnoname
    manwithnoname Member Posts: 402
    #4
    tanstaafl said:

    getting action and cost cutting

    Thanks Tony.  Oral K3 is incredibly cheap in asia, like $1.50 - 2 per 100 tablets of 5mg content since it is cheaper than vit K1 but removed from sale in industrialized countries because of neonatal contraindications.  K3 is part of the oral Apatone cancer treatment. We used to add ~50-90 mg K3 on infusion days but we prefer the MK4 version of oral K2 every day anyway for her particular tumor cells based on actual chemosensitivity testing of combinations and some bloodwork.    

    Our cost of regular, home based IV vit C infusion is much less than retail office medical, which is about $160-$225 in the US for 50-100 grams of ascorbate. When we disagree with doctors, I do more homework, try to find at least one doctor that is experienced and agreeable.  But as my wife tells them, my husband has final say.  Having been screwed over the years and now avoid being screwed with, we're into independence, usually capable of going it mostly alone. 

    Hey

    Did you edit your post? sure I read pediatric, anyway I wanted to say your post is by far the most impressive I have read on any forum by far, not sure if everyone who reads gets what you say I think a book is in order, a kind of guide on how and what you did, what markers you follow and why etc.

    I might just keep bumping this thread till it sinks in. 

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #5
    Thanks for the overview, tans.

    It's really interesting.  I wish it was easier for people to try it out, if they want.

    Well, adding cimetidine is easy, and I think everyone should throw it into the mix with surgery, as a "can't hurt, might help" sort of thing.

    Glad to hear your wife is still doing well!

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #6
    annalexandria said:

    Thanks for the overview, tans.

    It's really interesting.  I wish it was easier for people to try it out, if they want.

    Well, adding cimetidine is easy, and I think everyone should throw it into the mix with surgery, as a "can't hurt, might help" sort of thing.

    Glad to hear your wife is still doing well!

    if handy at/near home

    Thanks, Ann.

    Initial retail cost, lack of broad medico-infusion support, and endemic medical biases are the primary issues with IV vitamin C.    Technically, IV vitamin C is not difficult to handle.  After the initial workup (exclude G6PD, iron diseases, end stage kidney disease) and simple written protocol, the biggest cost and effort is likely finding a sharpshooter nurse to insert the IV for home service or neighborhood clinic at long term negotiated prices. 

    If people were capped annually e.g. insured for $25,000 pa or paid cash, I am sure IV vitamin C + cimetidine etc would look a lot more reasonable than Avastin (or Erbitux).  

    If you could get IV vitamin C at the Walmartgreen clinics, that would ease initial access and ongoing cost.   Ren mentioned patients (ex-military?) who would plug IVs in themselves. 

    If people realized how much they are missing healthwise and in well being, they would think differently.  Most drs are completely misinformed on high dose vitamin C and some will scare, sniff dismissively or otherwise impose their unfortunate ignorance and superstitions upon patients.

    The lack of accurate information about high dose/IV vitamin C at home and professionally is a deadly shame.  Surgery and chemo would certainly improve.   People would not be nearly so afraid of venoms and dread contagious infections either, it's pretty simple when you have 24 hr IV vitamin C drips handy.   And talk about lower costs and hassle vs ER or hospital or "advanced"/IV medicines...

     

  • MaggieCat
    MaggieCat Member Posts: 54
    #7
    tanstaafl said:

    if handy at/near home

    Thanks, Ann.

    Initial retail cost, lack of broad medico-infusion support, and endemic medical biases are the primary issues with IV vitamin C.    Technically, IV vitamin C is not difficult to handle.  After the initial workup (exclude G6PD, iron diseases, end stage kidney disease) and simple written protocol, the biggest cost and effort is likely finding a sharpshooter nurse to insert the IV for home service or neighborhood clinic at long term negotiated prices. 

    If people were capped annually e.g. insured for $25,000 pa or paid cash, I am sure IV vitamin C + cimetidine etc would look a lot more reasonable than Avastin (or Erbitux).  

    If you could get IV vitamin C at the Walmartgreen clinics, that would ease initial access and ongoing cost.   Ren mentioned patients (ex-military?) who would plug IVs in themselves. 

    If people realized how much they are missing healthwise and in well being, they would think differently.  Most drs are completely misinformed on high dose vitamin C and some will scare, sniff dismissively or otherwise impose their unfortunate ignorance and superstitions upon patients.

    The lack of accurate information about high dose/IV vitamin C at home and professionally is a deadly shame.  Surgery and chemo would certainly improve.   People would not be nearly so afraid of venoms and dread contagious infections either, it's pretty simple when you have 24 hr IV vitamin C drips handy.   And talk about lower costs and hassle vs ER or hospital or "advanced"/IV medicines...

     

    Question Tans....

    Got a Vit C infusion the week after my breast cancer surgery.  Having chemo port installed this week.  Also being scheduled for pre-chemo blood work and muga scan.  From your research, any issue with infusion timing with respect to blood draws for labs? Thanks as always... Maggie

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #8
    MaggieCat said:

    Question Tans....

    Got a Vit C infusion the week after my breast cancer surgery.  Having chemo port installed this week.  Also being scheduled for pre-chemo blood work and muga scan.  From your research, any issue with infusion timing with respect to blood draws for labs? Thanks as always... Maggie

    testing

    My wife usually does the blood draw the next morning, 7-11 am, after the IV vitamin C, IV either am or finished up to ~9-10pm; blood draw say 10-25 hours later.  This appears to help reduce/remove inflammation noise in the biomarkers, both due to the series' effects (against inflammation, allergens, sepsis and infection) and sightly, the last IV's consistent next day timing.  She has very smooth, low noise lines in her CEA data.  Lately she's gotten some of her blood work 1.5-3 hours after the IV vit C and that is too soon although not too huge.   The frequent IV vitamin C also appears to shift the HgbA1C lower by less glycation rather than reflecting true lower glucose levels normally correlated with blood glucose; it's ok but you need to be aware of the shift and should probably get some fasting blood glucose data (let lab know about vit C).    

    Her blood sample is always from the arm.  The IV vitamin C is where ever looks good or unused, she has no port.

     

  • manwithnoname
    manwithnoname Member Posts: 402
    #9
    tanstaafl said:

    testing

    My wife usually does the blood draw the next morning, 7-11 am, after the IV vitamin C, IV either am or finished up to ~9-10pm; blood draw say 10-25 hours later.  This appears to help reduce/remove inflammation noise in the biomarkers, both due to the series' effects (against inflammation, allergens, sepsis and infection) and sightly, the last IV's consistent next day timing.  She has very smooth, low noise lines in her CEA data.  Lately she's gotten some of her blood work 1.5-3 hours after the IV vit C and that is too soon although not too huge.   The frequent IV vitamin C also appears to shift the HgbA1C lower by less glycation rather than reflecting true lower glucose levels normally correlated with blood glucose; it's ok but you need to be aware of the shift and should probably get some fasting blood glucose data (let lab know about vit C).    

    Her blood sample is always from the arm.  The IV vitamin C is where ever looks good or unused, she has no port.

     

    Hey

    Did your wife ever have sodium issues? it's the only thing that concerns us.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #10
    manwithnoname said:

    Hey

    Did you edit your post? sure I read pediatric, anyway I wanted to say your post is by far the most impressive I have read on any forum by far, not sure if everyone who reads gets what you say I think a book is in order, a kind of guide on how and what you did, what markers you follow and why etc.

    I might just keep bumping this thread till it sinks in. 

    notes

    [original answer 25 Nov 14]

    Yes, your memory was real, Tony.  I edit my threads to try to make them more readable and correct.    In the 1950s, some newborns had liver problems with K3 shots at elevated doses around 30-50 mg (instead of 10 mg), about 1/3-1/2 of an adult's daily cancer dose.  Essentially the liver tries to manufacture MK4 (the active, human form of VK2) from K3, an unnatural type of source, and depletes the isoprenyl group supply.   So they switched to cheap enough, slower to metabolize VK1, which is less useful or a dud for CRC.  We use MK4. 

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #11
    manwithnoname said:

    Hey

    Did your wife ever have sodium issues? it's the only thing that concerns us.

    Her sodium level is fine.

    At the first year mark, even with 4-5 infusions per week, more vegetables maintained her blood potassium level near the low end of acceptable. Then a daily 10 meq cap of potassium was needed in the 2nd-3rd years, with some slacking off on the vegetables.   Now with higher dehydroascorbate, maybe less vegetables, maybe something else, she needs three 10 meq potassium caps daily.  Also she doesn't get as much P5P and riboflavin as she used to for optimum kidney status/performance.   The IV vitamin C contains lots of magnesium for vein comfort (and kidney protection for pre-exisiting high oxalate formers). At the highest vitamin C amounts, IVs may be become magnesium restricted to a maximum magnesium load, like somewhere over 150 grams C per infusion for an adult male.  Calcium levels may be rebalanced with more vitamin D3 and small amounts of calcium.   It's mostly in the bloodwork and adequate hydration.

  • Amazon77
    Amazon77 Member Posts: 2
    #12
    tanstaafl said:

    if handy at/near home

    Thanks, Ann.

    Initial retail cost, lack of broad medico-infusion support, and endemic medical biases are the primary issues with IV vitamin C.    Technically, IV vitamin C is not difficult to handle.  After the initial workup (exclude G6PD, iron diseases, end stage kidney disease) and simple written protocol, the biggest cost and effort is likely finding a sharpshooter nurse to insert the IV for home service or neighborhood clinic at long term negotiated prices. 

    If people were capped annually e.g. insured for $25,000 pa or paid cash, I am sure IV vitamin C + cimetidine etc would look a lot more reasonable than Avastin (or Erbitux).  

    If you could get IV vitamin C at the Walmartgreen clinics, that would ease initial access and ongoing cost.   Ren mentioned patients (ex-military?) who would plug IVs in themselves. 

    If people realized how much they are missing healthwise and in well being, they would think differently.  Most drs are completely misinformed on high dose vitamin C and some will scare, sniff dismissively or otherwise impose their unfortunate ignorance and superstitions upon patients.

    The lack of accurate information about high dose/IV vitamin C at home and professionally is a deadly shame.  Surgery and chemo would certainly improve.   People would not be nearly so afraid of venoms and dread contagious infections either, it's pretty simple when you have 24 hr IV vitamin C drips handy.   And talk about lower costs and hassle vs ER or hospital or "advanced"/IV medicines...

     

    vit C

    Hi, where can I buy non GM vit C for IV? Thanks

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #13
    Please start new thread

    This thread goes back to Nov 2014. Please start a new one

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