fed up

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fed up

Postby jimmylegs » Mon Nov 05, 2018 8:27 am

venting re my friend's cancer xp.
i tabled the zinc idea much earlier this year, then gave it up to a large extent when we heard 'no' re zinc testing. or so we thought.
i also had to do a lot more reading, to build up confidence re throwing zinc at breast cancer specifically.

then within the last few days, as a line result in a more recent lab printout, there it is. a zinc result from june. it was 10 umol/l, with no red flag re deficiency. this is at a major cancer centre, operating within a system supposedly using 11.5-18.5 umol/l for its reference range, and the lab was not set up to recognize 10 as a problem. they are not screening cancer patents for zinc deficiency. after success with a much more recent requisition (results still not in, we found the june info while looking for recent updates) it was apparently a big challenge even finding the right vial because, per one of the nurses, 'in seventeen years, i've never had to test zinc'. why??!!??!

so now, she's been through chemo (and was hospitalized for days with a serious infection in the process), all while zinc deficient. awesome.

the next thing that happens is the radical mastectomy, the major concern there being whether the rate at which she heals, will allow for radiation on schedule. yeah no reason to optimize zinc though right :S

oh and her sister who went for mammogram since this all transpired, has lumps. those are still in the process of being tested. that sister had success with her initial zinc test request. 10.3 umol/l. i only saw hard copy and i don't recall details re range, but i don't think they flagged deficiency in her case either.

am i the only one thinking negligence???

ps all this time i was thinking my original deficiency was flagged because i was tested at a large hospital using a good reference range vs a local neighbourhood lab using its own local/internal range. now realizing it was just dumb luck that possible ms patients in that jurisdiction happen to get sent to this one hospital within the city's system, whose lab just happens to be set up to recognize the reference range according to the regional lab standards. yikes.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: fed up

Postby jimmylegs » Thu Nov 08, 2018 2:13 pm

update. lab is using 9.4-15 umol/l for its zinc ref range. way to go guys. at least they bothered to call when the post chemo result came back low (6.8 umol/l).
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: fed up

Postby orphansparrow » Thu Nov 08, 2018 9:57 pm

Wow. I'm so sorry about this. What a mess. I hate it that people we love get sick. It's a pretty helpless feeling sometimes. I had no idea zinc deficiency was anything to consider with cancer. I'm going to mention it to my best friend who is living with brain cancer (going on 5 years).
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Re: fed up

Postby jimmylegs » Fri Nov 09, 2018 4:02 am

every cancer is different, but this common thread has been identified in some of the research. it's worth looking at what's been studied or not in your friend's specific cancer type. before this i had no idea what a pandora's box the words 'breast cancer' could open up!

as for action items on this end, i happened to find zinc picolinate which the lit suggests has better bioavailability. in the final runup to surgery, we are throwing a bunch at the problem orally, and trying topically as well based on a smattering of publications spanning the last NINE decades if you can believe it.

i am still cheesed at the care team because if it wasn't for us pushing, she'd be going under the knife with no idea how poor her capacity to heal from surgery would be.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: fed up

Postby jimmylegs » Fri Nov 09, 2018 4:26 am

related
DNA damage from micronutrient deficiencies is likely to be a major cause of cancer (2001)
https://www.sciencedirect.com/science/a ... 0701000707
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: fed up

Postby ElliotB » Fri Nov 09, 2018 7:27 am

Many diseases may be a result of a nutrient deficiency of one kind or another. The human body is complex and it only makes sense the proper nutrition is paramount. Perhaps someday scientists/nutritionists will figure out exactly what proper nutrition is - they certainly have not figured it out yet. With 1/2 or more of the world's population sick, proper nutrition likely has not yet been determined - I don't think the human body is 'defective' by design.
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Re: fed up

Postby jimmylegs » Sat Nov 10, 2018 3:26 am

yep complex interactions of genetics and environment (diet, lifestyle, epigenetics, toxins, marketing of and exposure/vulnerability to unhealthy choices etc). optimal essential nutrient status to the best of our current ability is still way off the radar for average joe public - including many within the medical profession.

the call about low zinc came with no recommendation to correct. just 'we don't know the significance' of it. makes me appreciate my past family doc even more. a happenstance combination of exposures to good people and places.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: fed up

Postby jimmylegs » Sat Nov 10, 2018 11:43 am

topical zinc went on for the first time last eve. after an hour i asked how it felt. i meant did it feel weird or painful but she physically reached for the lump, and had trouble finding it at first. it had shrunk that rapidly, and it has stayed that way since. it has felt that small before, but her docs have said it can feel different day to day depending on what is going on in the tissue around it. so we think the topical zinc went to work on inflammation surrounding the core tumor. T-11 days to surgery.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: fed up

Postby jimmylegs » Tue Nov 13, 2018 6:26 am

yesterday, we went over whether the size decrease might be hangover effect from last chemo.
a lot of the related literature on lag time and tumor dose response is in the radiation context, not chemo.
most chemo lit seems to be talking more about how long side effects can drag on after the drugs have cleared the patient's system.
i asked her about overall status since last chemo treatment (towards the end of last month), to what extent had it been stable or changed.
she said it had felt somewhat smaller up to three days after final treatment (still late oct), then stable after that until last fri.
she also reports that it felt even smaller yesterday, than it did after that the first effects noted post topical application midday on fri of last week.
i wish we had sorted out some way to measure even halfway objectively, but the thing is not on the surface, after all :S
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: fed up

Postby jimmylegs » Tue Nov 13, 2018 4:43 pm

today is T-8 days to surgery.

still no copper results, so we don't know for sure that the high dose zinc is safe. at least it will only be for the short term.
seems unlikely that copper would actually be low, and better to address the zinc deficiency than not. hopefully we will know for sure soon.

the dietitian apparently *can't* provide input on the supplement regimen. i knew they generally *wouldn't* but hadn't imagined they would balk altogether, even in a deficiency situation.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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