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sophie
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Joined: May 25 2019
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Topic: Any one using Copper Depletion for Off Trial Use? Posted: May 29 2019 at 2:29pm |
My email is: xiaodongbi69@gmail.com
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RachaelSouthEast
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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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sophie
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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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RachaelSouthEast
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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
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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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123Donna
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Joined: Aug 24 2009
Location: St. Louis, MO
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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
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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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RachaelSouthEast
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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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123Donna
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Posted: Apr 11 2018 at 11:00pm |
Rachael,
Following up to see how you are doing? Are you still in the clinical trial?
Donna
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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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RachaelSouthEast
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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.netThey are in WI, and may have a local recommendation for you. Best of luck!
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Colleendray
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Location: Napa, ca
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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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Elpida
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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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Colleendray
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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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RachaelSouthEast
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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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Colleendray
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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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RachaelSouthEast
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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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Colleendray
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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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RachaelSouthEast
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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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cthusband
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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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RachaelSouthEast
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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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Sara414
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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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