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TM users

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: TNBC Talk
Forum Description: A place to chat
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13333
Printed Date: May 31 2020 at 9:24am
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com


Topic: TM users
Posted By: TinaM
Subject: TM users
Date Posted: Apr 11 2018 at 7:47pm
Looking for doctor to prescribe TM (tetrathiomolybdate) copper depletion drug

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Dx 80% TN 20% POS, 2B-3,BRCA neg, sentinel node neg., three LX w/no clear margins lymphovascular invasion, chemo 4 AC 4 TC, single Mx, RT not rec., reconstruction



Replies:
Posted By: 123Donna
Date Posted: Apr 11 2018 at 10:56pm
There have been a couple of threads in the past talking about this subject and getting it off label.  

http://forum.tnbcfoundation.org/any-one-using-copper-depletion-for-off-trial-use_topic12876_page1.html" rel="nofollow - http://forum.tnbcfoundation.org/any-one-using-copper-depletion-for-off-trial-use_topic12876_page1.html

http://forum.tnbcfoundation.org/copper-depletion-trial-phase-ii-results_topic11974_page1.html" rel="nofollow - http://forum.tnbcfoundation.org/copper-depletion-trial-phase-ii-results_topic11974_page1.html

http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.2557" rel="nofollow - http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.2557

Phase II Clinical Trial:

http://clinicaltrials.gov/ct2/show/NCT00195091" rel="nofollow - http://clinicaltrials.gov/ct2/show/NCT00195091


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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



Posted By: Jojocat
Date Posted: May 05 2018 at 1:29pm
Hi everyone, I am taking TM for 4 years already. I have been 4.5 years out of cancer. I have ignored this forum for a long time since life is quite normal now. My oncology who prescribes me TM told me many successful cases including using TM to control a stage 4 patientís disease progression. I am so glad that I am back to this forum that I can share my journey to many of you. I just want to say to newbies, hey donít get scared and donít quit. We will be fine.
        My friendís mom had non-small cell lung cancer. She got the recurrence on the surgery spot a year after the original diagnosis. She started to take TM 2 years ago. She just had scan and everything is clear recently.
Joanie.

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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


Posted By: Jojocat
Date Posted: May 05 2018 at 1:31pm
I am seeing Dr mark Rosenberg. He is great, you can contact him if you want.

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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


Posted By: 123Donna
Date Posted: May 06 2018 at 10:17pm
Jojocat,

Do you have a contact number for your doctor or a website?  Is he in New York?




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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



Posted By: Chris RN
Date 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


Posted By: Leahstuffle
Date 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?


Posted By: Chris RN
Date 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


Posted By: Leahstuffle
Date 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!


Posted By: Chris RN
Date 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


Posted By: Leahstuffle
Date Posted: Apr 18 2019 at 8:21pm
Sent you an email!


Posted By: sophie
Date 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


Posted By: strongtogether
Date Posted: Nov 21 2019 at 6:27pm
Hi Sophie,
 I am wondering how you went with TM?


Posted By: sophie
Date Posted: Nov 21 2019 at 8:47pm
I havenít started yet as wanted to take xeloda first...my integrated medicine doctor also prescribe misotle for prevention. how are you with your treatment?


Posted By: strongtogether
Date 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?


Posted By: sophie
Date 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?


Posted By: strongtogether
Date 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. 
Is this not correct?
https://www.ascopost.com/issues/january-25-2019/role-of-adjuvant-capecitabine-in-triple-negative-breast-cancer/" rel="nofollow - https://www.ascopost.com/issues/january-25-2019/role-of-adjuvant-capecitabine-in-triple-negative-breast-cancer/



Posted By: sophie
Date Posted: Nov 24 2019 at 5:32pm
 here is what I read ďed treatment with adjuvant capecitabine did significantly improve both disease-free and overall survival in a prespecified subgroup of patients with a nonĖbasal-like phenotypeĒ.

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




Posted By: strongtogether
Date 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


Posted By: sophie
Date 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 . 


Posted By: waterfall315
Date 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. 


Posted By: LizSpike
Date 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


Posted By: 123Donna
Date Posted: Feb 11 2020 at 8:16am
Check out this link from another user.

https://forum.tnbcfoundation.org/copper-depletion_topic13660.html" rel="nofollow - https://forum.tnbcfoundation.org/copper-depletion_topic13660.html




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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



Posted By: Mariote
Date 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.


Posted By: Mariote
Date 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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