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Mariote
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Joined: Feb 19 2020
Location: Canada
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Points: 14
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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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Mariote
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Joined: Feb 19 2020
Location: Canada
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Points: 14
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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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123Donna
Senior Member
Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
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Posted: Feb 11 2020 at 8:16am |
Check out this link from another user.
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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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LizSpike
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Joined: Feb 03 2020
Location: NYC, NY
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Points: 1
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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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waterfall315
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Joined: Jan 27 2020
Location: Hudson, NY
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Points: 1
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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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sophie
Groupie
Joined: May 25 2019
Location: philadelphia
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Points: 69
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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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strongtogether
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Joined: Aug 07 2019
Location: Australia
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Points: 88
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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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sophie
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Joined: May 25 2019
Location: philadelphia
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Points: 69
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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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strongtogether
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Joined: Aug 07 2019
Location: Australia
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Points: 88
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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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sophie
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Joined: May 25 2019
Location: philadelphia
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Points: 69
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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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strongtogether
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Joined: Aug 07 2019
Location: Australia
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Points: 88
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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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sophie
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Joined: May 25 2019
Location: philadelphia
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Points: 69
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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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strongtogether
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Joined: Aug 07 2019
Location: Australia
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Points: 88
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Posted: Nov 21 2019 at 6:27pm |
Hi Sophie, I am wondering how you went with TM?
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sophie
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Joined: May 25 2019
Location: philadelphia
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Points: 69
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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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Leahstuffle
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Joined: Jul 26 2018
Location: Nashville, TN
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Points: 48
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Posted: Apr 18 2019 at 8:21pm |
Sent you an email!
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Chris RN
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Joined: Jun 25 2018
Location: Tucson Arizona
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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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Leahstuffle
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Joined: Jul 26 2018
Location: Nashville, TN
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Points: 48
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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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Chris RN
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Joined: Jun 25 2018
Location: Tucson Arizona
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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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Leahstuffle
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Joined: Jul 26 2018
Location: Nashville, TN
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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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Chris RN
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Joined: Jun 25 2018
Location: Tucson Arizona
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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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