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Old 05-25-2016, 11:46 PM   #21
VDC
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Re: Resveratrol--interpret this article?

So Cal Gal,
I completely agree! And I don't think I would be hesitating except for the little piece of my life that I didn't share. My father is undergoing heart ablation surgery the 6th of June to be followed by 2-3 weeks of not lifting more than 10 pounds. He won't be able to live alone until he can lift more than 10 pounds. Right now, I am the one scheduled to stay with him through those 2-3 weeks in June. That is the second reason why I would really like to wait until early July for the trial treatment. I treasure my time with my dad. Our times together are limited given his health and age.

At the same time, I don't want to be stupid! If I'm honest I will tell you I am wrestling with it right now! My husband and I had a long chat last night and are leaning toward starting the trial treatment the beginning of July, but we will be discussing it further to be sure! In the meantime I am filling out paperwork and getting registered etc. There is no end to paperwork is there?

Oh, and the OTHER thing causing me to pause just a bit is that our son is also trying to enter a clinical study. His is a phase 1 trial....one of those "never tried in humans" trials. It has been a difficult decision deciding if he should try to qualify for it or not. But tomorrow he makes the phone call asking to be screened. I"m not entirely sure what that will entail. I would like to be available to help him during this initial phase.

Despite all these issues going on in my life, I completely agree with everything you have said! No arguments here! And I appreciate your thoughtful and honest response! REALLY I do! Please do keep the thoughts coming. I take suggestions seriously.

Thank you!
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Old 05-29-2016, 01:21 AM   #22
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Re: Resveratrol--interpret this article?

SoCalGal,
I take the idea of complementary medicine! (not alternative). I DO think there is much that isn't known about what we call supplements...both for good and for bad. I would truly like to see more research in it, but there just isn't any money in supplement research! What drug company wants to sponsor research that wouldn't bring in any funds? That is part of why I have been doing supplement research on my own for quite some time. Not in isolation, but in concert with traditional medicine. Of course prior to this cancer diagnosis it was with my son who has Homozygous Familial Hypercholesterolemia. Against medical advice I started tinkering with his supplements and medications (always with his physicians knowledge) and we were able to lower by 50% his LDL beyond what traditional medicine was able to accomplish.

Do I think supplements can cure cancer? NO! A resounding no. I am NOT trying to cure my cancer with supplements. However, I would like to slow it down a bit! As I told my family when I began supplement research, "I would like to make this cancer as unhappy as possible by every means possible!"

I am scheduled to start an immunotherapy trial in early July. I was supposed to start in June but my dad is having heart ablation and I am his caregiver. So, July it is.

Thank you for caring! Your response was obviously out of care and concern.
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Old 05-29-2016, 05:52 AM   #23
scrunchthecat
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Re: Resveratrol--interpret this article?

Thanks for the most informative post, VCD. SoCalGal- I have a question for you: your profile states that you developed a herceptin allergy, but then went on premeds and things got better? I have been taking H&p for a a year now, including 6 rounds of thp in the beginning. I never really had any problems. In January I stopped premeds, and by March I developed instances of severe itching on my shoulders and my left forearm (but not my right forearm - the side I had bc on and now treat for mild lymphadema.) my question: what was the nature of your herceptin allergy - did it occur during infusion only? - and have the premeds cleared this up?? Thanks for your help.
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June 2015 - Stage IV, HER2+++, HR-. Mets to liver, assorted lymph nodes.
June 2015 - Begin THP
October 2015 - End THP, begin H&P. PET-CT shows resolution of mets to liver & lymph nodes.
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Old 05-30-2016, 07:36 PM   #24
donocco
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Re: Resveratrol--interpret this article?

My wife just got back from the Mississippi river cruise. We went downriver from Memphis to New Orleans. At the end of the cruise one of the directors thanked us for contributing to 160 American jobs. Im glad we did.

This was a while back but VDC put that Interleukin-6 info on the board. Thanks. Interleukin 6 is very important in the progression of cancer. One of the reasons if not the main reason so many cancers metastasize to the bone is the facgt thagt the bone stroma is rich in IL-6 producing cells.

The sad thing is we have two FDA approved anti-interleukin 6 approved drugs- Actrema and Sylvan. Actemrama is FDA approved for Rheumatoid Arthritis and Siltuximab (Sylvan) for Castlemans syndrome an aids syndrome. These drug might (I say might) have valuue in treating cancer. Insurance only pays for the FDa approved use and doctors arent free to use them because of the fact they are controllerd by the insurance companies. This has to change

Paul
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Old 05-30-2016, 07:38 PM   #25
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Re: Resveratrol--interpret this article?

Sorry for the mispellings. Exhausted by the long trip home

Paul
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Old 05-31-2016, 12:29 AM   #26
SoCalGal
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Re: Resveratrol--interpret this article?

@scruchthecat...after years of herceptin, during an infusion, suddenly, about 5 minutes into drip, I had rapid heartbeat, pressure in chest, rapid pulse and felt like I couldn't breathe and was going to black out. I hit the stop button. They all came running. As soon as drip was stopped all symptoms began to subside. 1 mg Ativan and 20 min later, we slowed the rate waaaaay down but I couldn't restart the drip. Infusion aborted. Saw my onc who sent me to a random allergist. He prescribed prednisone starting the day before (20 mg at 4pm. 20 mg at midnight). Two 150 mg Zantac day before at 4 and morning of. One singulair day before and morning of. Also two benedryl morning of treatment. That 50 mg knocks me into loopy. BUT I've been able to resume herceptin theses last several years. It's an ordeal! My allergy was an extreme and near immediate reaction. Not sure the many ways an allergy presents. Hope this helps.
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 05-31-2016, 08:53 PM   #27
VDC
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Re: Resveratrol--interpret this article?

Donnoco,
Sounds like you had a splended vacation! Glad to hear it!

I intend to do some more research on this, but have you discovered any "interesting" supplements that MIGHT help in reducing interleukin?

I've been swamped with other research and really haven't given this question much time. Just wondering if you might have any interesting places for me to start my research!
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Old 05-31-2016, 09:28 PM   #28
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Re: Resveratrol--interpret this article?

VDC

I read your post and did some quick research just to give you some leads/


Omega 3 fatty acids reduce IL6 particularly the docoshexanoic acid

DHEA lowers interleukin 6. DHEA is a proandrogen so I dont know its effect on breast or prostate cancer. In one study where elderly men were given 50mg DHEA daily for an extended period, there was no rise in the PSA or prostate specific antigen.

The drug Pentoxyphylline or Trental is effective in lowering Tumor Necrosis factor alpha and Interleukin 6 but is a prescription drug.

If Pyncnegenol reduces C reactive protein it logically will lower Interleuki 6. Ill do some quick research on that now

Paul
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Old 05-31-2016, 09:55 PM   #29
donocco
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Re: Resveratrol--interpret this article?

VDC

Yes Pycnegenol lowers interleukin 6 but these were test tube cell cultures. The lowering of C reactive Protein by Pycnegenol from 3.9 to 1.1 was an in vivo study done on osteoarthritis patients.

Pycnegenol also lowers Matrix Metalloproteinase-9 levels. This MMP9 is involved in metastasis as the protein matrix between cells is dissolved allowing cancer cells to penetrate the tissues.

Coenzyme Q10 seems to lower Interleukin 6 levels and Matrix Metalloprotein levels (not 100% sure about the MMP-9). This caught my attention. This was a Danish study way back where metastatic breast cancer patients with liver mets were given 390 mg Coenzyme Q10 daily and in a few patients the mets disappeared. Maybe you can find that study and put it on the board.

Paul

Happy researching
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Old 05-31-2016, 10:33 PM   #30
VDC
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Re: Resveratrol--interpret this article?

I am very familiar with the CoQ10 studies! The studies are of poor design and it is impossible to know what confounding factors might be in play in these reports. Still, it was interesting enough to me, for me to add CoQ10 to my repertoire of supplements several months ago. It was especially interesting because some of these women had liver mets and they disappeared on higher doses of CoQ10. I found it something to consider because I take a statin for high cholesterol and statins are known to reduce natural CoQ10 levels. The latest research even indicates that statins may slightly increase the chances of breast cancer.....hm, that would be me.

These are probably the studies you are talking about! They were the ones that caused me to add CoQ10 to my diet!

http://www.ncbi.nlm.nih.gov/pubmed/7612003

http://www.ncbi.nlm.nih.gov/pubmed/7752835

http://www.ncbi.nlm.nih.gov/pubmed/7908519

Of particular interest was the third one
http://www.ncbi.nlm.nih.gov/pubmed/7908519
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Old 05-31-2016, 11:37 PM   #31
VDC
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Re: Resveratrol--interpret this article?

I'll see if I can find the osteoarthritis study. I look to these studies to determine what dosage might be appropriate. The in vitro studies are interesting and may or may not hold true in vivo, but regardless, in vitro studies give no indication what dosage might be effective in vivo. Even if applied to osteoarthritis, it still gives some indication what dosage has been used safely in human subjects.

edit: Found 'em!

http://www.news-medical.net/news/2008/12/10/44001.aspx

The article above is for the lay person while the article below is the original article

http://www.ncbi.nlm.nih.gov/pubmed/19017467

This study suggests 100 mg daily for osteoarthritis. When I looked at Pycnogenol to purchase, it wasn't quite as clear. Most Pycnogenol is labeled as such, BUT when you look at the labels they are labeled as "Pine Bark Extract" standardized to 70% procyanidins. Makes me wonder how much of those procyanidins are actually pycnogenol! There doesn't appear to be a way to determine the exact amount of pycnogenol in each supplement. I went with a supplement called "Pine Bark Extract" rather than one labeled "Pycnogenol" because it actually had a GREATER percentage of procyanidins! Go figure!
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Old 05-31-2016, 11:56 PM   #32
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Re: Resveratrol--interpret this article?

Here's an interesting study

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063649/

which showed that Andrographolide, an herbal medicine, inhibits Interleukin-6 expression and suppresses prostate cancer cell growth.

Now prostate cancer isn't breast cancer, BUT........
it is interesting! I have no idea what Andographolide is but I will research it and see what I find out.

Wow! Look at this one! http://www.pnas.org/content/105/38/14692.full
This shows that EGCG, epigallocatechin-3-gallate (EGCG) inhibits IL-6 synthesis. I find this particularly interesting because I have been on EGCG (green tea extract) for about 3-4 months. Fascinating!
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Old 06-01-2016, 02:23 AM   #33
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Re: Resveratrol--interpret this article?

VDC

You got the articles. The I think Danish study where the patients with mets became clear of them. The dose of Q10 apparently is very important. Someone taking Q10 for mets probably should take about 400mgs per day. Serum level may be important like with seizure meds. I didnt realize that the results had been duplicated in other studies. That is encouraging. I thought one of the pts in the Danish study had pleural mets but I wasnt sure. I read it years ago.

As far as I know there is no single chemical pycnogenol. Its the mixture of chemicals you mentioned. It comes from a bark of a pine tree that grows in Gascony, a province of southwest france. Ill doublecheck tommorrow. I buy it from Amazon. Yes the osteoarthritis study was the exact one where a pycnogenol dose of 100mg daily dropped the C reactive protein from 3.9 to 1.1.
Inflammation is a relatively general term. It seems to be effective

Im really interested in the last plant you mentioned. I never heard of that one but it sounds interesting. Ill print out the article at work Thursday.

One thing Id like to study is the mechanism of action of these IL6 blockers.
If they have different mechanisms of action they could be combined. Thats
how you treat high blood pressure. Start with Hydrochlorothiaze. If that isnt sufficient add a Calcium Channel blocker (Norvasc). If you still have to drop the blood pressure lower add a Beta blocker (Atenelol) etc. Each blood pressure drug has a different mechanism of action.

This interleukin 6 vs herb lowering is something to research. Keep me busy.

Thanks for your efforts

Paul
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Old 06-01-2016, 02:28 AM   #34
donocco
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Re: Resveratrol--interpret this article?

This is a blanket statement - Discuss these supplements with your Oncologist.

Paul
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Old 06-01-2016, 10:06 PM   #35
VDC
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Re: Resveratrol--interpret this article?

Donnoco,
Oh yes, you've covered your bases! No worries. I keep my oncologist "informed" but ultimately I take responsibility for my own choices!
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Old 06-01-2016, 10:12 PM   #36
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Re: Resveratrol--interpret this article?

Donnoco,
If you do find that these supplements decrease inflammation by different mechanisms, please do share! It would be an interesting thing to know!
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Old 06-01-2016, 10:37 PM   #37
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Re: Resveratrol--interpret this article?

I was doing a little snooping around looking for other anti-inflammatory herbs and ran across this article:

http://www.naturalmedicinejournal.co...mmation-update

I found it interesting because it was a revisit of curcumin which apparently has anti inflammatory properties, BUT the article also mentioned the curcumin-PC-phytosome which I had previously read about. The Curcumin-PC-phytosome increases the bio availability of curcumin 18 fold! On a whim, I googled "curcumin-PC-phytosome" and discovered that the stuff is commercially available from many "health stores." Now THAT is news. Here we have a curcumin that is FAR more bio available than standard curcumin? ...and it is readily available? I"m going to have to do some more reading, but my mind is sufficiently piqued.
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Old 06-01-2016, 11:07 PM   #38
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Re: Resveratrol--interpret this article?

VDC

That is interesting. The problem with Curcumin is the poor absorbtion.

Ill share one idea that has been in my mind for awhile. There is something called the copper/zinc ratio. You measure the serum copper in microgram % by the serum zinc in microgram% and get a ratio. A level of both copper and zinc of 90microgram % would be a common level for both zinc and copper.

Say you draw blood from a healthy 20 year old woman. The copper/Zinc ratio might be 0.85 meaning the serum zinc is higher than the serum copper. If the zinc level were 100mcg% (a normal value) and the serum copper were 85mcg% the copper/zinc would be 0.85.

In cancer you run into cu/zn ratios of 1.5, 1.8. 2.2. As the cancer gets more progressive the copper/zinc ratio rises. If you had 100 women with breast lumps and drew blood on all of them you could pretty well diagnose the cases that are malignant by calculating the copper/zinc ratio. Interestingly women with benign breast lumps have a cu/zn ratio in between cancerous and no lump women. One hundred women with no breast lumps might have a copper/zinc ratio of 0.9. Those women with fibrocystic lumps might have a ratio of 1.1 while those with breast cancer might have a copper/zinc ratio of 1.5 and higher. I realize cancer is now diagnosed before the lump stage now but the death rate hasnt dropped. That is a whole different story.

This abnormally high copper/zinc ratio holds true for every cancer. Melanoma might be an exception. Not sure. Perhaps you could put a few articles on the board.

I have often asked myself "What if you artificially raised the zinc blood level by taking oral zinc supplements. What if you took a dose daily of zinc sufficient enough to
lower the the copper/zinc ratio to a normal level of say 0.9. This might have a beneficial effect on the course of the cancer. It might not. I doubt it would cause much toxicity.Of course I cant be sure. I think its worth a try. I wouldnt expect this bjt it wouldnt shock me if this produced a very beneficial effect. Stranger things have happened. In this case you have to work with a willing physician as only an MD can order the necessary blood tests to measure the zinc copper levels and calculate a copper/zinc ratio. It makes sense to correct an abnormality virtually always seen with cancer. Just like each bacterium needs certain nutrients to thrive maybe cancer depends on this high copper/zinc ratio/ Please forgive any mispellings

Paul

PS cancer has been treated with copper reduction with some success but changing the copper/zinc ratio to a normal level seems easy and may be worth trying.
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Old 06-01-2016, 11:15 PM   #39
VDC
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Re: Resveratrol--interpret this article?

Paul,
Someone else on this board once posted about the copper zinc ratio. They had a progressive doctor who had done both copper and zinc testing. She was now on zinc supplements. I'll have to see if I can find the posting....although I don't think the thread had a name that indicated this discussion. I may not be able to find it.
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Old 06-01-2016, 11:19 PM   #40
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Re: Resveratrol--interpret this article?

Now that I'm thinking about it, I think I would want more information how the copper zinc is being metabolized by both the body and the cancer. For example if the zinc is being consumed by the cancer (and thus increasing the copper zinc ratio) then adding zinc to the body could just encourage the cancer by providing MORE of the substance that the cancer is using to thrive.

Just a thought. I"ll have to see what I can find.
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