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Any one using Copper Depletion for Off Trial Use?

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sophie View Drop Down
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    Posted: May 29 2019 at 2:29pm
My email is: xiaodongbi69@gmail.com
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RachaelSouthEast View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2019 at 2:26pm
Hi Sophie -

Do you want to send me your email and I can email you?

Thanks,
Rachael
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2019 at 7:58am
Rachel, thank you so much for providing Dr Mark info... I will send him an email to see if he can help me w/o oncology get involved...,

I am doing everything I can via this TN journey to prevent recurrence...I got knowledge on using xeloda to kill residual ( which may not apply to me as I did surgery first), wanted to add carboplatin into my next regiment ( I am doing 8act, complete 3 ac, t is on the way) , I am pretty sure that my current oncology doesn’t want to get away from standard treatment ... his famous response is “ we don’t know, time can tell”...LoL but really sucks!!

Rachel, I read some of your previous  posts, what other treatments sort of targeted did you have other than standard ACt to prevent cancer coming back or kill the residuals?

Many thanks !  I can send you a private message as well...

Sophie 


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Post Options Post Options   Thanks (0) Thanks(0)   Quote RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2019 at 7:40am
Hi Sophie -

Colleen may have another perspective but most of the women I know that do TM outside of the scope of the trial use Dr. Mark. Bricca. He is the doctor that originally forwarded me to the trial six years ago, but since the trial isn't currently accepting new patients, there are many that do it outside of the scope of the trial.

He also works with patients on mitigating the side effects of treatment, selecting appropriate chemo regimens, etc. Please let me know if you have any follow up questions.

xoxo,
Rachael

http://bodhicittahealingarts.com/
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sophie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2019 at 7:18am
Hi colleendray,

Hope all is well... I am reading old posts noticed this copper depletion topic ... is there a way that we know where to get this drug and what are the doctors that willing to be flexible to help us?

Long story short: I am stage 1 , left 1.3cm, lymphovascular invasive, no nose, doing 8 ACT ... wanted to see options after chemo to avoid recurring...,

Many thanks To Donna to provide the old posts for me to get aware of my options ... love you all ....

Sophie 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2018 at 12:08am
Rachael,

So happy to hear that you are still in the trial.  Great news!  I'm doing great.

Donna
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 RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2018 at 3:27am
Hi Donna -

Thanks for asking. Yes. So far, so great. Everyday is a blessing, I remain in the trial and all is well. How are things with you?

Best,
Rachael
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2018 at 11:00pm
Rachael,

Following up to see how you are doing?  Are you still in the clinical trial?

Donna
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 RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2017 at 5:06am
I don't know if any in NY as most of the people I know of use Dr. Bricca remotely and Quest labs to check the levels.

Here is the compounding pharmacy's website.

http://www.theprescriptioncenter.net

They are in WI, and may have a local recommendation for you.

Best of luck!
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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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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 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 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 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 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 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: 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 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 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 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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