straight two+ years of (immuno)chemo

tanstaafl
tanstaafl Member Posts: 1,313 Member
edited July 2015 in Colorectal Cancer #1

My wife has taken daily, oral UFT chemo with multiple modulators for two+ years now. The longest "break" between two treatments was 36 hrs, for her second surgery, to remove the cluster of multiple para aortic lymph nodes, higher up at the renal arteries. That totals about 175,000 mg of 5FU content. She is never "chemo sick" in the sense of fatigue, diarrhea, N&V (nausea etc), hair loss, hand-foot syndrome, lost days etc. She had minor mouth ulcers (stomatitis) for a month because of the 5FU-folic acid problem. She comes and goes as she pleases to the mall and restuarants, with friends, or to take care of business - no sudden disasters. Her CT remains stable with "thingies" in lungs and liver. She requires the full combined regimen, the CEA starts to move up without some of the alternative modulators.

I think daily multimodulated UFT has been a superior antimetastasis formula for her to prevent spread from the residual tumor burden. Her doctors remain pleasantly, very surprised. There is simply no chemo "off period" for metastatic circulating cell clusters to spread anew and unchallenged, with agents present specific to fight their "docking" and beachhead invasion, continuously.

My job remains to identify the remaining met burden and get them excised or exterminated before perpetual chemo damages critical organ function. I have seen individuals go up to 7-11 years on maintenance level 5FU related chemos (UFT and Xeloda), but I feel that's too long.

UFT is not available in the US and Canada but is in much of Europe and Asia. Some groups might argue that UFT isn't "as good", or at least "better". No trials that I've seen have properly optimized UFT's use similar to my wife's. I get the impression that capecitabine (Xeloda) may be better at killing larger masses than UFT as a single therapy but capecitabine may not be as good at stopping circulating tumor clusters from "landing" and spreading to distant sites. UFT's special strengths are good additive properties with ** multiple modulators** (including alternatives) that other chemo agents do not match, long term tolerability with good QoL, an important molecularly targeted inhibitor beyond the 5FU, oral use, and being generic.

Comments

  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #2
    Hey Tans.......
    I just want to say I think you are doing an awesome job of helping your wife. Truly incredible. It's caregivers like you that give people like ME hope and the desire to go on. You rock Tans!

    Jennie
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #3
    congratulations and awesome regime
    dear tanstaafl,

    the regime you have for your wife i think a credit to your genius and insite.

    alot of our regimes overlap in parts, more by coincidence then design.

    and i like two independent researchers basically reaching common conclusions about challenging problems where well conventional offerings are uninspiring.

    i need a little inspiration from time to time, and this post and what you have achieved is inspirational. certainly taking the least used path, actually cutting your own track in a way.

    given my imagination could you consider a hyperthetical health regime named "petetan"
    with the best of lef, tan and pete healthy tips that may even cure or at least offer significant advantages over standard chemo regimes for a fraction of the cost.

    given the way folfox6 is composed of multiple hardcore chemos, i also see the synergy of multiple soft core chemo like therapies. its just picking the therapies.

    i do dream of a workable regime, whatever shape it takes that saves more lives today. big expensive multi center clinical studies just don't use the power of the internet to get results fast enough.

    one day a regime similar to yours may very well be advocated for many classes of stage 4 crc, you will be able to say "i did it my way"

    i view the regime you have designed as almost my next stepping point if my natural options fail to stop my cea rises.

    i wish you and your wife happiness and health. keep up the great work.

    hugs,
    pete

    ps and yes your wife and i are in the terrible twos
  • steved
    steved Member Posts: 834 Member
    #4
    Thanks for the info
    It is interesting to see the different regimes used though often I am unclear for teh rationales behind them. Would be interested to know what you base your conclusions around UFT vs capecitabine on. In the UK the recommendations and guidelines are developed by an organisation called NICE which supports the use of both drugs but leaves it up to clinicians to decide which based on the fact there is no evidence to chose between them. Also interested in the avidence around the additive properties of modulators with UFT compared to capecitabine as also not aware of this research.

    I did iv 5FU back before xemoda was available and in truth found no difference except convenience- I tend to get away with few side effects from either that or capecitabine, but find issues of efficacy hard to judge as my tumour is very slow growing- hard to know what it would be like on no treatment!

    Would welcome more data and details.

    steve
  • janie1
    janie1 Member Posts: 753 Member
    #5
    steved said:

    Thanks for the info
    It is interesting to see the different regimes used though often I am unclear for teh rationales behind them. Would be interested to know what you base your conclusions around UFT vs capecitabine on. In the UK the recommendations and guidelines are developed by an organisation called NICE which supports the use of both drugs but leaves it up to clinicians to decide which based on the fact there is no evidence to chose between them. Also interested in the avidence around the additive properties of modulators with UFT compared to capecitabine as also not aware of this research.

    I did iv 5FU back before xemoda was available and in truth found no difference except convenience- I tend to get away with few side effects from either that or capecitabine, but find issues of efficacy hard to judge as my tumour is very slow growing- hard to know what it would be like on no treatment!

    Would welcome more data and details.

    steve

    Hi Tans
    That is remarkable what you have researched and accomplished in the past 2 years. I can't imagine the amount of time you have put into your wife's treatment. I don't understand it all, but i know that you know, and that's what counts.

    When I had liver surgery in January, I sure wanted to get the cimetidine IV.......I had a lot of disease and the thought of it spreading with all that "cutting" was scary, and, I'm still really nervous about it. I figured there was no sense in bringing it up with the surgeon......already knew what the answer would be. Well.... still dealing with the liver and wondering what next?

    Sure wish you would start a clinic in the U.S.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #6
    steved said:

    Thanks for the info
    It is interesting to see the different regimes used though often I am unclear for teh rationales behind them. Would be interested to know what you base your conclusions around UFT vs capecitabine on. In the UK the recommendations and guidelines are developed by an organisation called NICE which supports the use of both drugs but leaves it up to clinicians to decide which based on the fact there is no evidence to chose between them. Also interested in the avidence around the additive properties of modulators with UFT compared to capecitabine as also not aware of this research.

    I did iv 5FU back before xemoda was available and in truth found no difference except convenience- I tend to get away with few side effects from either that or capecitabine, but find issues of efficacy hard to judge as my tumour is very slow growing- hard to know what it would be like on no treatment!

    Would welcome more data and details.

    steve

    my inquiries
    Steve, it's results oriented translational research, drawn from disparate medical and industrial literature sources.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #7
    janie1 said:

    Hi Tans
    That is remarkable what you have researched and accomplished in the past 2 years. I can't imagine the amount of time you have put into your wife's treatment. I don't understand it all, but i know that you know, and that's what counts.

    When I had liver surgery in January, I sure wanted to get the cimetidine IV.......I had a lot of disease and the thought of it spreading with all that "cutting" was scary, and, I'm still really nervous about it. I figured there was no sense in bringing it up with the surgeon......already knew what the answer would be. Well.... still dealing with the liver and wondering what next?

    Sure wish you would start a clinic in the U.S.

    going beyond
    Thanks, Jane, cancer is a 24x7 affair.

    "...already knew what the answer would be"
    One has to stay in there pitching, plowing through "no"s until you get to "yes" or a better offer. That means digging for new leads and practicing for a high stakes interview and presentation (at the top, you may only have a few candidates). It appears critical to present the doctors with medical CRC papers on cimetidine (like Matsumoto, 2002) and say, "I want this". Cimetidine was already used in surgery for years to prevent aspiration of gastric acid. So cimetidine for surgery should not be a real issue. My wife was even treated with the oral form, pre-surgery, when the pharmacies couldn't come up with the IV form.

    ...in the US? The US might not be the best place for small time affairs with unavailable drugs. We're already medical refugees.
  • steved
    steved Member Posts: 834 Member
    #8
    tanstaafl said:

    my inquiries
    Steve, it's results oriented translational research, drawn from disparate medical and industrial literature sources.

    Unclear
    I'm afraid I'm not sure what resutls oriented translational research is- I am open to a lot of thase ideas but find making my own assessment of the literature the best way to make decisions about my care. I would really welcome details of any particular research you have found on xeloda vs UFT on what you talked about as the differing efficacies.

    steve

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