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Hello and copper depletion

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Post Options Post Options   Thanks (0) Thanks(0)   Quote positive_attitude Quote  Post ReplyReply Direct Link To This Post Topic: Hello and copper depletion
    Posted: Sep 15 2014 at 10:53am
Hi,

My name is Rebecca Ma. I am from Louisiana. I was diagnosed as having TNBC on May 25. My tumor grew from around 5cm to about 6cm between my diagnosis and first four weeks' of Taxol. They switched me to AC and now I did my 5th dose of AC and my tumor is about 2.5cm. I will have another dose of AC and then have surgery on Oct 17. The information from this forum has been very helpful.

Someone on this site posted an article on copper depletion and I found promising: http://journals.lww.com/oncology-times/Fulltext/2014/02100/Triple_Negative_Breast_Cancer__Copper_Depletion.10.aspx. I am thinking of having my copper level tested and do things to lower to copper level so that my cancer does not spread. Is anything doing anything to their copper level?

Thanks,

Rebecca
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CBK Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2014 at 12:52pm
Hi - I'm in a Copper Depletion Therapy clinical trial at Cornell Medical Center in NYC that is getting very encouraging results. Here's some information from Cornell: http://weill.cornell.edu/news/pr/2013/02/copper-depletion-therapy-keeps-high-risk-triple-negative-breast-cancer-at-bay.html.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote positive_attitude Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2014 at 1:30pm
For those of us who could not get into the trial, is there anything that we could do to manage our copper level?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CBK Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2014 at 3:00pm
That's a really good question. We take pills that keep our levels low. Here's an article about the trial. Maybe forward this (or print and bring) to your doctor? I know it's been successful enough that they're starting another (randomized, which kind of sucks, but better than nothing) trial fairly soon, I think ... http://journals.lww.com/oncology-times/Fulltext/2014/02100/Triple_Negative_Breast_Cancer__Copper_Depletion.10.aspx

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Post Options Post Options   Thanks (0) Thanks(0)   Quote rosewater Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2014 at 3:30pm
Hi CBK, what pills do you take?

Thanks!
Rosewater
DX IDC TNBC 03/14 age 40, Stage 1, Grade 3, 2cm, 0/4Nodes, lumpectomy 04/14, DD A/C x4, Taxol x12, Carboplatin x2, BMX 10/14, rads x28 Finished Jan 14/15, Oopherectomy Jan 29/15 BRCA 2+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote positive_attitude Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2014 at 4:08pm
CBK,

How long have you been on the treatment? How does it work for you?

Thanks,

Rebecca
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CBK Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2014 at 4:25pm
I'm running out the door but will post in a few hours ... just don't want to keep you waiting. Smile

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Post Options Post Options   Thanks (0) Thanks(0)   Quote CBK Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2014 at 7:44pm
Okay -- so the pills are Tetrathiomolybdate, 20 mg. Here's some info about the drug: http://www.ncbi.nlm.nih.gov/pubmed/23406736.  Depending on how high your copper levels are, you take more or fewer pills. I only take two/day (total of 40 mg.) because my normal level is apparently already very low (which begs the question why did I get triple-negative bc in the first place?!), but most people in the study take 9 pills a day. I'm in another trial at Cornell with a bone strengthening drug, Alendronate Sodium (70 mg), aka Fosimax, which I take once/week. It's usually used for osteoporosis. http://www.ncbi.nlm.nih.gov/pubmed/23406736
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2014 at 7:53pm
Hi Rebecca and welcome to this wonderful group.  There have been a few threads talking about Copper Depletion.  I'll post the links.  Some have been able to enter a clinical trial and a few may be doing it outside of the trial.



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote positive_attitude Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2014 at 8:23am
CBK and 123Donna,

Thank you for responding. I will call to find out about Phase III of the trial. In the mean time, does anyone know of any doctor in south who would treat using TM?

Thanks

Rebecca
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 8malik Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2014 at 8:21pm
CBK I haven't heard of a clinical trial with copper depletion?  Mine is a drug that boosts your immune system to attack the cancer.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CBK Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2014 at 10:50pm
8malik, see the post above yours by 123Donna. She provides links to information about the trial I'm in at Cornell Medical Center with Dr. Linda Vahdat.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 8malik Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2014 at 6:26pm
CBK Thanks for the information
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Post Options Post Options   Thanks (1) Thanks(1)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2014 at 7:06pm
One thing to be aware of if any of you take multi-vitamins: make sure to read the labels because copper can be an ingredient found in several brands of multi-vitamins. Life Extension makes a safe multi vitamin without copper. 

Lisa
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jojocat Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2014 at 10:45pm
CBK:
   How low was your cooper level? I was 22mg/ul. I had the same question you had that why did I get cancer if I was already low. I am getting 40 mg per day too. But dr. Vahdat told me that I can take 100 mg. why do you only take 40?

Rebecca:
    Thank you for sharing the new info with me. I am going to call them to get a back up.   I am not too happy with dr . Chang.
    Joanie.
DX 10/24/2013 Between stage 2b and 3a. 2 big nods 1.8cm a d 1.4 cm. tumor 4.5 cm.   35 years old. 11/15/2013. AC/T
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CBK Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2014 at 10:04am
Jojocat, all I know is that my copper level hovers around 15 naturally and most people are at 28-45. (I'm not sure whether we're talking about the same units but that's the extent of my knowledge.) Yes, why.

By the way, I was at Cornell yesterday and was told that the new study has not been approved yet and there's no waiting list yet. They're hopeful that it may begin in the spring, but don't know.

There is a doctor in NYC who is not part of the study who administers copper pills; Cornell refers people to him but they didn't give me his name for this purpose because they said they don't want him to be inundated.  So I guess you could email Cornell and nicely ask for the referral?

TriplePositiveGirl - you are right. We are advised NOT to take multivitamins. Instead, I take what I jokingly call A through F every day: aspirin, B-12, C, D, E, and fish oil. And the copper pills. I was so anti-supplements before cancer that I never even took pre-natal vitamins, reasoning that I eat well and get every nutrient I need naturally. Now I swallow a whole batch at once. Funny how life changes.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2014 at 12:16pm
Hi CBK -

I know what you mean! I was never a big supplement taker until "cancer" came into my life. I now take curcumin (anti-inflammatory), fish oils, Vit D3, Bitter Melon, Bee Propolis, B12 and Mushroom Supplements fairly regularly. I stopped taking multi-vitamins a while back even though the brand I was taking had no copper in it. 

I have learned a lot about nutrition and supplementation since having cancer. At least something good came from something bad.

I would be very interested to hear about your copper deletion experience as time goes on. I find this study very fascinating - and I hope it continues to benefit those involved in the study.

Best Wishes,
Lisa
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote math666 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2014 at 10:46pm
Could someone please update the phase III status of Copper Depletion Therapy clinical trial ?

If the phase III has been approved by FDA, that means a lot .

Thanks very much !

math666

-------------------------------------

Jojocat Posted: 04 May 2014 at 11:09am

I just spoke to Dr Vahdat who is in charge of the clinical trial. The trial is curently closed for phase 2. Phase 3 is approved by FDA already. It is coming soon maybe this fall of next year. If you call them they will take your information and let you on later. The trial is free absolutely. 

http://forum.tnbcfoundation.org/copper-depletion-trial-phase-ii-results_topic11974_post121207.html?KW=#121207


CBK Posted:18 Sep 2014 at 10:04am

By the way, I was at Cornell yesterday and was told that the new study has not been approved yet and there's no waiting list yet. They're hopeful that it may begin in the spring, but don't know.

http://forum.tnbcfoundation.org/hello-and-copper-depletion_topic12196_post122920.html?KW=#122920

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2014 at 11:16pm
Math666,

So far there is no Phase III study listed on the clinical trials website.  



At the Weill Cornell website, it says the Phase II study is closed to enrollment, but no mention of Phase III.




DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote math666 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 30 2014 at 9:42pm
Thanks a lot, Dona!

I will study the clinical trials website.

math666
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