New Posts New Posts RSS Feed - Copper depletion trial - phase II results
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Copper depletion trial - phase II results

 Post Reply Post Reply Page  123 6>
Author
ana View Drop Down
Newbie
Newbie
Avatar

Joined: Jan 22 2014
Location: Los Angeles
Status: Offline
Points: 14
Post Options Post Options   Thanks (0) Thanks(0)   Quote ana Quote  Post ReplyReply Direct Link To This Post Topic: Copper depletion trial - phase II results
    Posted: May 03 2014 at 3:52pm
Hi all
Don't know if you've seen this yet. I came across it and thought I'd post. I believe it's the phase II results of the copper depletion therapy and its very interesting and gives me a lot of hope for my sister. If you look at the survival data you will see what I mean. I believe you have to be off chemo and NED to qualify for this trial. Looks like this trial is going Into phase III and is recruiting.

Try and find out more from your doc cause I don't have an onc so....and my sister is in the middle of her first 6 months of chemo so its not for her right now.

I am not to familiar with posting on this site so if you know of any tnbc mets girls who are NED and would benefit or like to know about this, please pass on this info.

http://journals.lww.com/oncology-times/Fulltext/2014/02100/Triple_Negative_Breast_Cancer__Copper_Depletion.10.aspx
Good luck
Anna

Edited by ana - May 03 2014 at 3:52pm
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13317
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 5:16pm
Anna,

Thank you so much for posting about this trial.  Here is your link made hot:


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

Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 5:51pm
Ana, that is fascinating and a remarkable study with very encouraging results. I'm set to see my onc for my annual followup in May so I'm in that gathering stage to ask his opinion on new research and this is one I'll add to my list

ps, this is timely for me also because I've been looking at compression wear, specifically for my knee, and I was just about to order one that has copper added to the weave. Now I think I'll go with the bamboo one instead. For anyone who hasn't tried the compression wear, especially after chemo, they are helpful.

Edited by mainsailset - May 03 2014 at 6:59pm
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
Jojocat View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 11 2014
Location: New York
Status: Offline
Points: 108
Post Options Post Options   Thanks (0) Thanks(0)   Quote Jojocat Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 7:09pm
Any one is Ned. Go for it now, don't hesitate. The only thing we have to do is paying the drug out of our own pocket. Maybe Only $200-300 a month we can get the treatment now. Otherwise you can wait for the trial. But I won't wait.
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
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13317
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 8:02pm
Jojocat,

Is there a requirement to be so many months out of treatment?  How often do you have to go for treatment?  Sounds very promising.

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

Back to Top
Jojocat View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 11 2014
Location: New York
Status: Offline
Points: 108
Post Options Post Options   Thanks (0) Thanks(0)   Quote Jojocat Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 8:23pm
Hi Donna:
     I don't think there is requirement unless the Dr thinks you don't need because you have been out of it for so long. I have a strong feeling that this time is true.   
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
Back to Top
Jojocat View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 11 2014
Location: New York
Status: Offline
Points: 108
Post Options Post Options   Thanks (0) Thanks(0)   Quote Jojocat Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 9:05pm
Hi Donna:
        We take tetramolybdate pills few times to deplete copper until reaching the half of what we need. Then, we take less dosage to maintain the levels. Normally it takes 1 month to reduce the level. The Dr will monitor our blood work.
Joanie
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
Back to Top
Jojocat View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 11 2014
Location: New York
Status: Offline
Points: 108
Post Options Post Options   Thanks (0) Thanks(0)   Quote Jojocat Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 9:22pm
This is the video about a 4th stage survivor who Is getting copper depletion for 6 years. Donna please make this one hot.
www.wndu.com/.../Stopping-copper-to-stop-cancer-20...
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
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13317
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 9:34pm
Joanie,

I couldn't get the link to work.  Can you try copying it again?

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

Back to Top
Jojocat View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 11 2014
Location: New York
Status: Offline
Points: 108
Post Options Post Options   Thanks (0) Thanks(0)   Quote Jojocat Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 9:46pm
Hi all: another Dr who would do copper depletion and give prescription. Dr. Karen Gremminger in Oshkosh,
Wisconsin. The prescription was filled by The Prescription Center in LaCrosse, Wisconsin, USA.


Hi Donna:

Can you try this one.
http://www.wndu.com/mmm /headlines/Stopping-copper-to-stop-cancer-204898791.html?device=tablet
Joanie


Edited by Jojocat - May 03 2014 at 10:12pm
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
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13317
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2014 at 12:13am
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

Back to Top
ana View Drop Down
Newbie
Newbie
Avatar

Joined: Jan 22 2014
Location: Los Angeles
Status: Offline
Points: 14
Post Options Post Options   Thanks (0) Thanks(0)   Quote ana Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2014 at 2:52am
Girls
I would just do anything for this to work, anything. So many women need this. I am praying. My sister is only 42 and there are girls so much younger still. Something has to give, right? Maybe this is it.

I am praying for you Jojo, brilliant that you are able to do this trial. I'm going to tell my sister tomorrow. Keep us all posted on how you get on. I am so happy for you.

Hugs and love to all
Anna
Back to Top
Jojocat View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 11 2014
Location: New York
Status: Offline
Points: 108
Post Options Post Options   Thanks (0) Thanks(0)   Quote Jojocat Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2014 at 6:58am
Hi Anna:
I am not in the trial but I am able to get TM treatment as soon as I am done with my chemo and radiation. The coming trial will be phase 3. I won't be in the trial but will get treated.

That is an early post:
Thank all of you.
Just visited Dr. Vahdat. Yes copper depletion is very promising. Despite the clinical trial is closed but The dr will give me the treatment soon. I asked her why she wanted to do this. She said: because I am able to make change. She is a great person who wants to save life.
        It is hard to get this trial in to center because there is no drug corporation can make penny out of it. They rely on donations to run this trial.
        Please release this information to all sisters here. If you are Ned, go get copper depletion as soon as possible. This is not like chemo, no severe side effects. For 4.5 years, only 2 out of 11 stage 3 and 4 patients relapsed. Sisters, we are almost there. Try it, there is no down side.
        find dr. Linda Vahdat. Cornell hospital NY.
Best
Joanie
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
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2014 at 9:57am
Here's the clinical trial for the Phase II [URL= ][/URL]http://www.clinicaltrials.gov/ct2/show/NCT00195091?term=Tetrathiomolybdate+breast+cancer&rank=1   It shows that it's still recruiting but closes June 2014. I don't know how long it takes to conclude the analysis after it closes and then get FDA approval for the Phase III but that's the time.

It also shows that the only location is at Weill Cornell in NY but it is a pill form so could be taken at home, it would be the monitoring that would be problematic. Generally in a trial the trial drug is provided at no charge to the patient, but from posts here it looks like that may not be the case here.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13317
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2014 at 11:02am
Joanie and Mainy,

Thanks for the good information.  We've been talking about Copper depletion therapy for several years in this group and it's good to see positive results coming from the study, even if it is a small study.  I can understand how big pharma isn't rallying behind this since they won't make big money off an existing drug.  

If anyone needs to contact Dr. Vahdat about the trial or other questions, here's the contact information:

Contact: Linda Vahdat, MD212-821-0644ltv2001@med.cornell.edu


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

Back to Top
Jojocat View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 11 2014
Location: New York
Status: Offline
Points: 108
Post Options Post Options   Thanks (0) Thanks(0)   Quote Jojocat Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2014 at 11:09am
Hi all:
      I may cause some misunderstanding before. I want to clear something. I just spoke to Dr Vahdat who is in charge of the clinical trial. The trial is curently closed for phase 2. Phase 3 is approved by FDA already. It is coming soon maybe this fall of next year. If you call them they will take your information and let you on later. The trial is free absolutely.
       TNBC is so furious, that is why I won't wait for the trial. I am afraid that my NED won't stay too long. The doctor said she would prescribe me TEtramolybdate and monitor my blood. I have to buy TM from the pharmacy. If insurance company found out the extra blood work I may have to pay for that too. All of you can wait for the trial, most of you can get in. They need a lot TNBCs.
        The Dr also recommended a vaccine trial and a medicine LiLies is always taking( I forgot the name). Dr. Vahdat has many alternative treatments.
          I am sorry for the confusing part.

Donna:
I am getting carbo/Gemzar 4 cycles to prevent. Do you remember my remained 5 nodes? Is that regiment hard to take?
Best
Joanie
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
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2014 at 12:09pm
Donna, the news I read indicated that two Big Pharma have been granted manufacturing rights so this is now something they will promote...perhaps that's why the trial is indeed following what my understanding of trials was and that is that the patient pays no out of pocket. My bad if I'm misunderstanding!

Joanie, it's really too bad that the NIH website still lists the Phase II open, I hope that gets corrected! But that is really great news that Phase III is already approved, for once we won't have to wait years and years for the process to catch up.

For those, like me, who live in a rural area across the country I'm sure it's going to be problematic to get access to this. But I will be asking my onc in June when the pass opens up. Thanks again.
Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
cthusband View Drop Down
Newbie
Newbie
Avatar

Joined: May 05 2014
Location: connecticut
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote cthusband Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 11:10am
Hello All - I have been monitoring this board on behalf of my wife for almost 3 years now.  My wife was diagnosed with TNBC in august, 2011.  She had her lumpectomy at MSK and then did her chemo(DD - AC and T(12 weeks) and radiation at local hospital where MSK referred us to.  I am writing because my wife has been in Dr. Vahdat's copper trial for 2 years and is very happy with it and Dr. Vahdat.  The one side effect of the TM is that besides depleting the copper in your system, it also reduces your white blood counts.  My wife had to go for blood draws every 2 weeks until they decided upon the correct dosage(about a month I think) and now she goes for blood draws every month .  As part of the trial, she also has a full PET scan every 6 months.  Her original participation in the trial was for 2 years and she just re-upped to continue in the trial. 
I want to thank all the long-term members of this forum for all the valuable support you provide to the rest of us.
 
Pete
Back to Top
lotusblossom View Drop Down
Groupie
Groupie


Joined: Feb 27 2013
Location: Canada
Status: Offline
Points: 69
Post Options Post Options   Thanks (0) Thanks(0)   Quote lotusblossom Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 7:24pm
I just recently became NED after almost 5 years of non-stop chemo. Based upon seeing this topic, I sent an email to my onc. He had absolutely no idea what I was talking about. I live close enough to New York to be able to get there on a regular basis, if I had to. But I am from Canada. Do you need to be American to oarticipate in this trial?

Thanks!
Lotusblossom
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13317
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 7:50pm
Lotusblossum,

That's a good question.  Can you send Dr. Vahdat an email?  Below is her contact information.

Contact: Linda Vahdat, MD212-821-0644ltv2001@med.cornell.edu

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

Back to Top
 Post Reply Post Reply Page  123 6>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.