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IV for 4

tanstaafl's picture
tanstaafl
Posts: 960
Joined: Oct 2010

Four years...it seems like only yesterday.  Hers has been a high quality four year journey with mCRC for two uncomplicated surgeries, only slight chemobrain from metronomic immunochemotherapy at home, mild scanxiety on blood tests every 5 weeks to 9 days, without the heavy chemo torture-follies and costs.  The first year had some diagnostic confusion, they weren't ready for massively necrosed mets with CAM like cimetidine etc, and we weren't totally prepared for various medical subplots and pitfalls. As she got better and better, it seemed she was statistically ever closer to dying from the start as the likely scope of original disease spread emerged.  This past year, we've been trying to integrate a potent celecoxib addition into her long term immunochemo treatment. Overall, some doctors are amazed that she's still here, she's "healthier" than her friends, goes around town with friends and family what-/whenever she wants,  still got to be Mom for 20 somethings, and builds toward an indefinite future.   

Although things are relatively good,  we are in a slow motion battle between what appears to be a smouldering met trying to break free at any reduction in critical chemo components, potential hypercoagulability and potential chemo erosion of the bone marrow.  This last struggle has been going on and around for 6 months.  Today she had her third decline in CEA and CA19-9 which are hopfully headed toward baseline again. Her CEA is back in the 2s after surging to almost 6 following a near hypercoagulability episode last summer.  We fight cancer daily - tooth, claw and nail while the cancer residues are fewer in number and small.  She has to keep on her chemo, IV C and supplements, which requires substantial discipline.  I do the heavy lift technically, and have to be ready with an instant analysis and response every blood draw.  A few prior posts.   That movie, Extraordinary Measures, seems wimpy.  

Of course, in terms of maimstream and institutional medicine, she is their basic nightmare.  She's only seen a genuine medical oncologist once (I've grilled six), ditto one radiation onc for surgeon's acceptance (12?), has no port and a small insurance policy. Our best ongoing support has  been our surgeons, radiologist and CAM/internal med MD. Her  formal 5FU-LV chemo program is five small pills a day, or less, about 400 mg total chemo (the tegafur in tegafur-uracil), under 10 dollars a day but recalcitrantly FDA unapproved in the US.   She's been getting 25,000-55,000 iu of vitamin D3 per day for over 3 years along with her hundreds of 60,000-90,000 mg infusions of vitamin C, along with much borrowed from Life Extension's list and CAM therapeutic nutritionists like Abram Hoffer, MD-PhD.  Sometimes it seems like we live in an alternate universe.  No doubt some "regular" doctors might think she's lucky to be alive just for all the supplements alone.  Surprised

traci43's picture
traci43
Posts: 432
Joined: Jul 2007

It's incredible what we all do in our struggle to beat cancer.  It sounds like your wife is doing well and able to maintain her quality of life.  I think you are lucky on many ways to be outside the U.S. and able to get access to treatments we are not.  I would love to be able to do weekly IV vitamin C but the cost $200/week is prohibitive as a long term therapy.  I hope her tumor markers continue to decline and she's back to her "normal" levels soon.

tanstaafl's picture
tanstaafl
Posts: 960
Joined: Oct 2010

Thanks Traci.  Getting generic UFT is problematic in the US because of US and FDA politics across 30 years, where xeloda is the nearest, rough substitute.  The FDA should be crucified about UFT, it looks like a key to affordable, scalable, gentle chemo choice. UFT even has 80-90% less fluorine pollution than capecitabine at treatment dosages.  

<=== Meeting the enemy on the beaches ... her IV vitamin C, hung from the tree, 

Prepackaged liquid IV vitamin C supplies have been partially disrupted by the FDA but are still available by other channels. If you split the setup, acquisition and administration costs/efforts among several patients, it could become much cheaper and easier.  IV vitamin C is very affordable once you have an RN or tech for IV, perhaps the "once a week club" in someone's living room or den.  I would aim under $50-60 with a group rate.  Maybe less.

Most supplements are cheaper and easier to get at the mail order and retail levels in the US, right now.   But celecoxib is already 90-95% cheaper in parts of asia.  Cimetidine at 90 x 800mg for $9-10 US retail isn't worth worrying about.

sdp's picture
sdp
Posts: 146
Joined: Jan 2012

That's great that she is managing all this with supplements and iv of vitamins.

can u pl give a list of what all supplements she'd is on and the dosage !

what about vitamin d levels in the blood - after such a high dose of vitamin d for such a long time I would like to know what the fit D levels in the blood test indicate.

i take. 60k iu vitamin supplement weekly and the blood levels show bit d level of approx 50.

 

tanstaafl's picture
tanstaafl
Posts: 960
Joined: Oct 2010

We don't do vitamin D blood levels very often but my wife's highest value was over 300ng/mL and then trailed off into the 100s over time at ca 35,000 iu D3 per day. We explicitly control calcium levels.  Prendergast says a much higher vitamin D3 peak is desirable for cancer tx, and then blood levels trail off over time.

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