IV for 3

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tanstaafl
tanstaafl CSN Member Posts: 1,312 Member
edited March 2013 in Colorectal Cancer #1

Three years out...we just got a second reading on her latest CT scan.  Everything stable, with some shrinkage or disappearance.   Blood biomarkers mostly back in the low end, slight rise in liver values.  However she's gained a lot of weight this past year, too much eating out and comfort food combined with less exercise after a knee injury.  

The original scope of her mets emerged slowly - the things in the lungs and in liver are spoken of more presumptively now, although they have not been biopsied.  Some have virtually disappeared.   The peritoneal seeding after removal of necrosed tumors from the mesentery almost 3 years ago has not re-emerged (per radiologists and surgeons' relieved, even enthusiastic comments).  No additional para aortic lymph nodes have surfaced anywhere since the conglomerated PALN cluster was removed 22+  months ago.   

Our journey has been quite different, welding diverse treatment regimens of Japanese chemo R&D, generic drugs, diet and supplements together.  Treated at home, she goes out or with friends as she pleases.  We are done debating outside opinions.   She only talks to the surgeons, me and the alternative MD, we also get her radiology and lab reports directly.   We are seldom bothered with the insurance, too small and restrictive, maybe 1-2x per year.  Her regimen is adjusted based on research and blood testing. We recently, finally, added a generic like Celebrex to help keep the biomarkers down.  

The most notable thing about my wife is that she is never sick, chemo, surgery or cancer wise.   She takes a **lot** of specifically chosen, targeted supplements throughout the day, as well as her generic chemo meds.    She doesn't go out for chemo, a small box of UFT is delivered monthly at home and a slender pack of leucovorin tablets.   There are no meds for the usual nausea-dirrhea-stomatitis-blood-etc problems.   The only emergency trip anywhere was after the first surgery, when she cut out of the hospital two days early, and went to the mall.     Another notable is that she should hit the 500 mark on IV vitamin C at the end of the summer. 

We are a curiosity to some.  For example, recently her personal blood tech asked her about vitamin D injections (she doesn't, just high strength oral).   It's been 18 months since she pegged out the reading of their automatic analyzer (it doesn't have a special dilution feature) so we don't get serum levels of vit D there anymore.  Perhaps they are still watching and puzzling over her blood levels. 

Our one slow motion debate is chemo forever vs more surgery pre-emptively.  

Comments

  • manwithnoname
    manwithnoname CSN Member Posts: 402
    #2
    amazing

    stable ,shrinkage, disappearence,  are there any sweeter words?

  • jen2012
    jen2012 CSN Member Posts: 1,607 Member
    #3
    Hi Tans...Im glad to hear
    Hi Tans...Im glad to hear your wife is doing well. Shes lucky to have you researching and getting treatments for her.
  • Chelsea71
    Chelsea71 CSN Member Posts: 1,169 Member
    #4
    Fascinating. Congratulations
    Fascinating. Congratulations to both of you. You seem like a wonderful husband. You're lucky to have each other.

    Chelsea
  • smokeyjoe
    smokeyjoe CSN Member Posts: 1,425 Member
    #5
    Chelsea71 said:

    Fascinating. Congratulations
    Fascinating. Congratulations to both of you. You seem like a wonderful husband. You're lucky to have each other.

    Chelsea

    Wonderful news Tans .....

    Wonderful news Tans ..... your posts always have me asking you questions ...." generic Celebrex like " ..... is this an over the counter med.  or prescription??? 

  • tanstaafl
    tanstaafl CSN Member Posts: 1,312 Member
    #6
    smokeyjoe said:

    Wonderful news Tans .....

    Wonderful news Tans ..... your posts always have me asking you questions ...." generic Celebrex like " ..... is this an over the counter med.  or prescription??? 

    celecoxib

    "like" refers to generic. Not all countries are still under the thumb of branded Celebrex and that less expensive generics are available e.g. 200 mg Celebrex cap discounted to $5.80 in the US, might be a $0.10 generic in asia.  In many countries, prescriptions are easy, cheap and not especially important for nonnarcotic drugs.  The primary US patent expired over a year ago.   

  • annalexandria
    annalexandria CSN Member Posts: 2,571 Member
    #7
    Congratulations!

    Making it three years in a stable state is something to be proud of.  You've clearly done a lot to make that happen.  What would be your wife's surgical options if you were to do this pre-emptively?

    Ps That link on the chemo your wife does is interesting...mentions that some have done it for 11 years, basically non-stop.  That's amazing.

  • tanstaafl
    tanstaafl CSN Member Posts: 1,312 Member
    #8
    annalexandria said:

    Congratulations!

    Making it three years in a stable state is something to be proud of.  You've clearly done a lot to make that happen.  What would be your wife's surgical options if you were to do this pre-emptively?

    Ps That link on the chemo your wife does is interesting...mentions that some have done it for 11 years, basically non-stop.  That's amazing.

    thanks

    We don't have any formal option with the surgeon right now (haven't been in this year), although he has indicated a lot of general interest before.  Basically my issue is how much her CEA could be reduced if we remove a lung nodule or a liver target, for both removal and biopsy.  I think that there are  1-2 CEA sources over background.  I figure that for her to achieve a curative result her CEA will probably stay around 1 and she is usually in the 2's.

    Success might come in two possible levels, some CEA improvement and a live site removal might mean willing to reduce chemo eventually, 10-25% would be an improvement.  An apparent cure might enable us to drop the UFT altogether.   Chemo forever, like that 11 year example, even with the nicest 5FU on the planet is a little daunting.  Any 5FU can't be good for mental acuity, eye sight and immune function through the retirement years.

    Of course, she's not eager for any more surgery short of the "gunpoint situations".  In my eyes, any surgery that will be needed in the future, if possible at all then, would be better when she's younger and the target smaller.  Another consideration is that we have a highly capable surgeon now that seems to give us maximum credit and opportunity.  His words last year about my wife's situation were, "In this [hospital], outside this office, no one will believe you." (already been there, done that with the oncs) Anything happens to the surgeon, and we're back in the middle of the street looking at Drs No, again.  

  • devotion10
    devotion10 Member Posts: 623 Member
    #9
    tanstaafl said:

    thanks

    We don't have any formal option with the surgeon right now (haven't been in this year), although he has indicated a lot of general interest before.  Basically my issue is how much her CEA could be reduced if we remove a lung nodule or a liver target, for both removal and biopsy.  I think that there are  1-2 CEA sources over background.  I figure that for her to achieve a curative result her CEA will probably stay around 1 and she is usually in the 2's.

    Success might come in two possible levels, some CEA improvement and a live site removal might mean willing to reduce chemo eventually, 10-25% would be an improvement.  An apparent cure might enable us to drop the UFT altogether.   Chemo forever, like that 11 year example, even with the nicest 5FU on the planet is a little daunting.  Any 5FU can't be good for mental acuity, eye sight and immune function through the retirement years.

    Of course, she's not eager for any more surgery short of the "gunpoint situations".  In my eyes, any surgery that will be needed in the future, if possible at all then, would be better when she's younger and the target smaller.  Another consideration is that we have a highly capable surgeon now that seems to give us maximum credit and opportunity.  His words last year about my wife's situation were, "In this [hospital], outside this office, no one will believe you." (already been there, done that with the oncs) Anything happens to the surgeon, and we're back in the middle of the street looking at Drs No, again.  

    You are one extraordinary husband and caregiver

    Your wife is very fortunate to have you by her side.  Congratulations on the success of her treatments. -- C

  • tanstaafl
    tanstaafl CSN Member Posts: 1,312 Member
    #10
    manwithnoname said:

    amazing

    stable ,shrinkage, disappearence,  are there any sweeter words?

    it's possible

    Thanks, Tony.  It is sometimes hard to remember that "cured" is possible.

  • renw
    renw Member Posts: 282 Member
    #11
    Just curious, have u ever

    Just curious, have u ever tried your personal regimen without the systemic chemo?

    Also could you PM me the details of the regimen you use, just in case I missed sonething. :) thx.

  • k44454445
    k44454445 Member Posts: 494
    #12
    wow

    congrats! great to hear this news!!!

    hugs

    judy

  • tanstaafl
    tanstaafl CSN Member Posts: 1,312 Member
    #13
    renw said:

    Just curious, have u ever

    Just curious, have u ever tried your personal regimen without the systemic chemo?

    Also could you PM me the details of the regimen you use, just in case I missed sonething. :) thx.

    yes

    During the first 4 weeks before surgery and 6 weeks after surgery, substantial but still "incomplete" supplements only with no chemo.  Took that long to figure out what to do about chemo. Otherwise, in retrospect would have started chemo at 10-14 days after first surgery.   There were substantial responses with necrosis and improvements before chemo but not all tumor material necrosed. You might want to look at my "about me" page for more details.  Pls email me.

  • Momofbbcc
    Momofbbcc Member Posts: 15
    #14
    Uft

    Where and how can you get UFT treatment delivered to your home?

    My dad started IV chemo last week for his colorectal cancer that has now spread to his para aortic lymph nodes and liver, and I am very worried about it for him, as he is 77 years old.

    Any help/advice would be so appreciated.  

  • Trubrit
    Trubrit CSN Member Posts: 5,805 Member
    #15
    Momofbbcc said:

    Uft

    Where and how can you get UFT treatment delivered to your home?

    My dad started IV chemo last week for his colorectal cancer that has now spread to his para aortic lymph nodes and liver, and I am very worried about it for him, as he is 77 years old.

    Any help/advice would be so appreciated.  

    Hello

    It might be better if you start a new thread with your question. That way you can put your question in the Subject line and it might get better responses. 

    Just an idea from a friend. 

    Sue

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