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Any one using Copper Depletion for Off Trial Use?

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hopefulr View Drop Down
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    Posted: May 24 2016 at 9:03pm
Hello All-
I am looking for patients or oncologists that are willing to talk with me about off trial use of the copper depletion drug to prevent TNBC or breast cancer. The phase III trial from Cornell is on hold till September. 
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2016 at 9:17pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 25 2016 at 7:52am
There was another thread on this subject and some members posted about getting it outside of the trial.  Here's a link to the thread:

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 (1) Thanks(1)   Quote Colleendray Quote  Post ReplyReply Direct Link To This Post Posted: Dec 10 2016 at 7:36pm
Hello all,
I was diagnosed with stage two one involved node in Nov 2014. I started working with an integrative cancer specialist/dr from the get go to supplement my western treatments. Last May my copper numbers increased, so he put me on tm therapy. In addition, I do take metformin as the two work on different levels to set up roadblocks. I have to be closely monitored to insure my red/white blood cell counts don't drop too low, but otherwise it's an easy drug to take with no side effects. If you contact the Prescription Center, they may be able to refer a Dr to you who will prescribe it. Most oncologists will not recommend as it has not received fda approval. However, as we know big pharmaceutical companies and the fda do not always have our best interests at heart. I still have one more year to go before I hit the three year mark, but so far so good. All tumor markers and inflammatory markers are low. At least I feel like I'm am doing everything in my power and the clinical trials were very successful. You do need to be Ned however, as the drug only works to stop a recurrence. Please feel free to message me privately with any questions.
Colleen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2017 at 3:03pm
Hi Ladies -

As many of you know, Dr. Linda Vahdat is the director of the Phase 2 Copper Depletion trial at Cornell Weill.  I am a stage 4 participant in the trial, and by the grace of God and Dr. Vahdat and her team, I have managed to remain NED for 3.5 years.

Dr. Vahdat is looking to raise the funds necessary to expand the trial and make it available to more TNBC women.  She does not have big pharma support, and is launching a crowdfunding campaign to help re-open and expand the trial.

Please spread the word, and consider donating. Every $ helps.  The following is an email from Dr. V. and the link to the fundraiser.

Be well!
Rachael
--------------------------------------------------------------------------------

Hello!


Please forgive me for the mass message but I’m trying to reach as many of the people I know who care as deeply about breast cancer research as I do as quickly as possible.

 

I want to share with you one of the most exciting projects I have ever had the opportunity to work on. We believe we have a strategy to prevent tumors from spreading through a simple, low cost and safe strategy. We are trying to obtain funding to conduct the next clinical trial to understand it more and it has been an enormous challenge because we don’t have a big pharma sponsor. It has really slowed us down and Federally-funded dollars are extremely competitive to obtain although we have been working tirelessly on it. 

 

Never one to give up, I am pushing forward and planning to raise funds to start the next trial by crowdfunding. You can make an enormous difference by sharing our site with your networks, getting the word out there and even donating any amount. Every dollar gets us closer to our goal of world without cancer. Please take a look at it.

 

https://crowdfunding.cornell.edu/breakingthroughcancer

 

All the best and wishes for a healthy New Year!

Linda


Linda Vahdat, MD MBA

Professor of Medicine

Director, Breast Cancer Research Program 

Co-Leader Breast Cancer Program at the Meyer Cancer Center


Join our Crowdfunding Movement at :   https://crowdfunding.cornell.edu/breakingthroughcancer

 


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Colleendray Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2017 at 8:05pm
Thanks Rachel for posting as I was curious about where the trial stood. It's tragic that it isn't moving forward due to money and the fact that no one stands to profit. But per my post above, the drug is accessible via certain integrative cancer doctors. And they have had, as you can attest to, amazing results!

Carry on ladies and do what you can! There is also another vaccine clinical trial via mayo clinic that it's also designed to block a metasis, for those in remission. Very few harmful side effects....so worth looking into.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara414 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2017 at 8:12am
Rachel. Congratulations on 3 1/2 years NED. If you don't mind, when you learned your cancer became stage 4 where did your cancer spread too? How big? How many?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2017 at 9:04am
Hi Ladies -

Firstly, Colleendray is exactly right.  There are MD's and ND's that utilize TM outside of the trial.  In fact, it was the fabulous Dr. Mark Bricca, ND, that originally told me about, and sent me to the trial.  We are so fortunate to have this broader support network.

By supporting Dr. V's trial, we are making the drug free to hundreds, and potentially thousands of additional women across a wide range of cancer centers, making it more cost effective and easier to access.  The hope is that if proven as effective as the phase 2 study indicates, the drug could ultimately be readily available to all.

As to Sara414's question.  I recurred 7 months after the typical double mastectomy/dose dense ACT front-line treatment.  The recurrence was to my chest wall. 

I then utilized Caris, Foundation One and http://weisenthalcancer.com/Home.html to customize a targeted chemo treatment and underwent more surgery, radiation, and another six rounds of chemo.  Following the second-line treatment, I joined the TM trial in October of 2013.

I hope that helps.
Be well,
Rachael
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara414 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2017 at 10:06am
Rachel, are you Stage 4 or Stage 3. Is this trial to prevent mestatic disease? Would it benefit someone who has already spread outside the breast area?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara414 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2017 at 10:14am
Also, I see my doctor Thursday and I am on a current regimine of AC First line treatment but Stage 4. Small met in paratracheal lymph node? What do I specifically ask her about if interested?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2017 at 1:26pm
Hi Sara414 -

I was considered stage 4 upon recurrence.  The trail is to prevent recurrence. My understanding - non-medical of course - is that you have to be NED (no evidence of disease) for the TM to be effective.  Thus, you need to complete your treatment and demonstrate via PET/CT/MRI that there is no evidence of disease at that moment, and then you begin the TM.

There are a number of women in the trial that had had bone, brain, lung, and liver mets, but the key here is - and again I am no doctor - that they were able to get to NED before starting the TM, by some combination of surgery, radiation, chemotherapy, and alternative treatments.  For what it is worth, I did all of the above.

I hope that helps,
Rachael


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Post Options Post Options   Thanks (0) Thanks(0)   Quote cthusband Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2017 at 2:22pm
My wife was in Dr. Vahdat's copper trial for 4 years and crossed her 5 year NED anniversary in August.  My wife and i donated to Dr. Vahdat's research via the crowdfunding site so that others may benefit from her work and would encourage any others with the means to contribute.  

  Pete
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2017 at 2:31pm
Thanks, Pete.  That is very kind of you.  And so happy to hear your wife's great news, and your's as well, of course.

We appreciate you spreading the word!

Rachael
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Colleendray Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2017 at 9:52pm
Hello Rachel,
I had a recurrence to one lymph node in December and did the Wiesenthal test. I'm holding off on chemo for the moment, doing some very intensive integrative treatments and watching my circulating tumor cell count like a hawk. I've also gone back on the copper depletion therapy, as there are thoughts that it may actually have been residual cancer vs a recurrence and that the drug was somewhat effective.
You are the Only person I have come across who has done both, so I would love it if you could share a bit about the Wiesenthal. The bug responded well to a combo of cisplatin and gemzar....but that's rather toxic stuff, a 74 percent rate. Also, did your oncologist tell you what your odds of survival would be with chemo vs without?
Mine didn't really seem to want to answer that question.
Bottom line, I'm open to the chemo if absolutely needed and if it improves my odds of survival by a good amount.
So glad I've come across someone else who has experience with both!
Cheers,
Colleen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2017 at 8:24am
Hi Colleen -

I was 100% going to do more chemo based on the CALOR study presented at the 2012 San Antonio Breast Cancer Symposium which showed that for ER - women with a localized recurrence, which is essentially what I had, and from your information sounds like you had, doing chemo a second time improves 5 year disease free survival from 35% to 67%.  

In my mind, that was a meaningful enough statistically significant benefit to taking a second crack at chemo, thus all of the profiling.  I am sure your doctors are familiar with CALOR and can give you the specifics, but if they can't I'd be happy to send you the presentation. 

I did six cycles of Cisplatin, which I found relatively "easy" compared to the dose dense AC.

I also did/do a complete customized integrative protocol based on the mutations found in my tumor developed by the fabulous Dr. Mark Bricca from right near you in CA.  Does he happen to be your doctor?

Keep up the good work, and let me know how I can help,
Rachael
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Colleendray Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2017 at 4:58pm
Lol! Rachel I am tracking right there with you....I know all about the calor trial.....my oncologist, not so much. Or at least he didn't mention it when I brought it up. And yes, your stats are right on. Mine combo would be cisplatin and gemzar based on my results. But yes, anything is easy after ACT!

I have heard of your doctor in the course of my extensive research, and have been under the guidance of an integrative cancer Dr in Santa Rosa, Dr. Isaac Eliaz. I'm also working with an integrative naturopath who has been keeping her cancer in check with all natural treatments...amazing as she has IBC....very aggressive as well. They approach my situation through slightly different lenses, so ultimately I have to be the one to decide what I feel is best for me.
If my ctcs increase in my next test(mid March), or we see any other warning signs, then I will opt in for chemo. But I have spent a lot of time, money and effort building up my defense and my immune system is vastly improved, so I would hate to rip it all down unless it's totally necessary.
Thank you so much for your quick response. You give me so much hope and I think we are very like minded in our approach.....so it's good to know that I am not alone in this topsy turvy journey.
I wish you the best of health and I hope others out there can learn from our posts.
Namaste,
Colleen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2017 at 5:52pm
Great, Colleen.  It sounds like you are well versed in the probabilities and have a clear thought process as to the path that's right for you.

I am glad you have found someone you are happy with, and have clarity as to your course of action.  That is so important.

Best of luck along your journey, and if I can help at all you know where to find me.

L,
r
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Colleendray Quote  Post ReplyReply Direct Link To This Post Posted: Mar 08 2017 at 2:26pm
Thanks Rachel.....I hope to be able at some point to take all this knowledge and pay if forward for other women. Ill keep you posted on my progress.
Stay well!
Colleen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Elpida Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2017 at 10:45pm
Hi there - does anyone have an oncologist or other doctor in the New York metro area who is prescribing TM (and doing follow up monitoring)?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Colleendray Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2017 at 11:11pm
If you call the lab that prescribes the drug, they should be able to refer a Dr to you. It's a compounding pharmacy out of Colorado. When I'm back home I can get you the number, but you may be able to Google and find who they are.
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