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Mariote View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mariote Quote  Post ReplyReply Direct Link To This Post Topic: TM users
    Posted: Feb 20 2020 at 2:13pm
Hi Jojocat. Would you be able to post the approx. cost of Dr. Rosenberg's treatment? Thanks kindly.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mariote Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2020 at 2:11pm
May I ask how you are doing with the mistletoe? My ND prescribed Helixor, he wanted to gradually increase the injections from 5mg up to 120mg... but my wife so far can barely tolerate 30mg, she gets really big red lumps, like 5-6 inches diameter, and sooo itchy... it's been almost 5 months for us but our ND encourages us to keep at it. How's your experience? BTW, our current chemo has us "stable" with small tumor reduction, we're not sure whether it's the mistletoe, the chemo, the hyperthermia, or the supplements.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2020 at 8:16am
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 LizSpike Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2020 at 9:57pm
TM or ATTM or Ammonium tetrathiomolybdate users

The FDA is looking to restrict access to this life saving compound.  I have deployed my friends to send support letters to Pharmacy Solutions, but now I am looking to engage to a broader audience so we do not get this compound taken away.  Note vet's can still give to animals it is so safe!

If you are interested, I need voices and stories as I work to compile our case. 

Liz
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Post Options Post Options   Thanks (0) Thanks(0)   Quote waterfall315 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2020 at 6:47pm
Hi
 It has come to my attention that the FDA is working hard to shut down the availability of TM (Ammonium Tetrathiomolybdate), which is currently being produced by one compounding pharmacy in the U.S.   The one compounding pharmacy is in Michigan.  Please write to the FDA and contact your Congress member to beg that they allow TM to be prescribed.
We urgently ask that you, and perhaps your families, write powerful letters to the FDA, so they are aware of the critical need for this medicine. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 24 2019 at 11:15pm
do you know what you have ? Here most MO will not indicate which type of TNBC do you have. It is kind of standard for any who have identified residual cancer cells will be taking this for 8 cycles. For me, I did sugery first so most likely is like preventive . 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Nov 24 2019 at 9:18pm
 I'm not medical, but my 7nderstanding is that there are 6 different types of tnbc. The majority of people have basal or basal-like phenotypes. So this implies that capecitabine is helpful in treating patients whose cancer is not of the basal phenotype.
I dont know 8f tumours are uniformly of one phenotype or if they are a mix or what? If your doctor thinks there is value well, they know more than what I know, but my impression is that this is not a medication that is prescribed to everyone.
I
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 24 2019 at 5:32pm
 here is what I read “ed treatment with adjuvant capecitabine did significantly improve both disease-free and overall survival in a prespecified subgroup of patients with a non–basal-like phenotype”.

This seems show benefit of improving survivor rate. What is basal like v non- basal like?


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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Nov 24 2019 at 4:47pm
My understanding was that capecitabine did not have an overall survival benefit for a majority of early tnbc cases, with the exception of non-basal tumours. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 23 2019 at 10:52pm
I am in U.S. yes xeloda is FDA approval. Have you asked your doctor on MIstole and xeloda for next step treatment?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2019 at 7:34pm
 Just getting ready for radiation therapy now. After radiation therapy is.... nothing. There is no further treatment planned.
This is something I really dont understand.  If you are NED it seems that standard practice is to do nothing..... yet I hear about things like MD. Why is this not standard care?
Why arent all tnbc survivors on Keytruda? I dont get that.
Sophie, when you say you are going on xeloda.... How does that work? I'm not sure where you live, but in Australia where I live the medication has to be approved by a national body. I assume that's the same in America and across the developed world. Is Xeloda approved for use in your country?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 21 2019 at 8:47pm
I haven’t started yet as wanted to take xeloda first...my integrated medicine doctor also prescribe misotle for prevention. how are you with your treatment?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Nov 21 2019 at 6:27pm
Hi Sophie,
 I am wondering how you went with TM?
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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 7:29am
Hi Chris , I am thinking to talk to my oncology to bring up this copper depletion option for avoiding recurrence... any insight on the availability and side effects? I really doubt if my current oncology willing to be flexible to give me a try! 

I will send you an email as well but wanted this topic to be aware of by many sister... 

Sophie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2019 at 8:21pm
Sent you an email!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Chris RN Quote  Post ReplyReply Direct Link To This Post Posted: Mar 28 2019 at 8:09am
Great! I am happy to hear that your oncologist is on board. That is fabulous. 🌄🌄 keep in touch! Chris
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Mar 28 2019 at 7:04am
Thank you so much!! I'm very interested in taking it, and my oncologist agreed, but we were stumped on the availability!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Chris RN Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2019 at 11:26pm
The only Compounding Pharmacy that I would recommend is Pharmacy Solutions in Ann Arbor Michigan.It is a long story but they are the only Pharmacy that will continue to dispense TM since the conclusion of phase 2 of the clinical trial. My MD wrote a brief letter of medical necessity to document why she was prescribing TM ...today ... And a prescription of course. Two years ago she read about the great results for TNBC ...phase 2 clinical trial results @ Well Cornell Medical Center in NYC, she was convinced that it could be a great choice to address the micro-environment and hopefully prevent metastasis. I am doing very well with no evidence of mets. Two years later. My cancer markers are below normal.My email is chriss1111@msn.com. Chris
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2019 at 10:36pm
Hello!! Was your Dr able to just write a prescription for it? Where did they get the TM?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Chris RN Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2018 at 6:53pm
Hi
I am new to the TNBC forum. I was diagnosed with Stage 3a NED, in February 2017. After a bilateral mastectomy and lymph node dissection, ACT chemo and 44 radiation treatments ( the scorched earth approach) I asked .my oncologist to review the original research for TM at University of Michigan George Brewer MD. And to also review the clinical trial outcomes at Wei l Cornell Medical in New York City. I am so fortunate that she felt that it was an excellent choice and gave full support. Thank you for your message and I am so happy that you are doing so well! Yay! I have been on TM since November 2017. I am grateful to have no metastasis at this time and below normal cancer markers. Zero side effects. Christine Simon RN Tucson Arizona
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