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Need straight scoop on Stage IV TNBC

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RachaelSouthEast View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2016 at 1:59pm
Hi Parker:

I was already NED.  It was a requirement for the drug trial.  I had been through one recurrence, four surgeries, four different types of chemo and 36 rounds of radiation before I started TM.  I also had an oncologist say a few disparaging things to me about the trial, but I don't think he'd done the work to have a well formed opinion.  Either way, here I am, good as new, happy, healthy, and living life to the fullest.

Send me the best way to get in touch with you and I can give you more details if you would like.

I started out with a CP of 32 and I believe the target therapeutic range is 12.  I have the research if you would like it.

Best,
Rachael

 
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Sharon E View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Sharon E Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2016 at 3:26pm
My PET scan today showed NED. I again talked to my onc about the copper depletion trial.  I had contacted the researchers and they are still trying to get funding for the phase III.  My onc was not convinced that this is proven yet as it was only 30 TNBC patients.  I am hoping the phase III can start soon so they can either prove or disprove it.  Are there a lot more people on the copper depletion drug that are not included in the trail?  If so, why are they not collecting all that data too?
3/12 Stg2b TNBC, IDC, Grade 3, age 49, 3 nodes, BRCA-,4/12-8/12 AC/T, 9/12 MBX no rads
10/14 Recur chest, BM, biopsy removed tumors, Gem/Carb 4,1/15, NED 1/15, Rads, 7/15 BM, Gem/Carb 4
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RachaelSouthEast View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2016 at 3:37pm
Hi Sharon -

Unfortunately, I am not a medical researcher or a doctor so I don't know what data they are/are not collecting.  I am not sure it would be accurate to suggest that they aren't collecting data outside of the scope of the trial, but I don't know.

I do know that Dr. Vahdat does run a Triple Negative Breast Cancer group or clinic of some sort at Cornell, and that there isn't a one to one mapping as to who's in which group.  

I also know several people who are on TM outside of the scope of the trial; however, I have no idea what happens to their data.  I am so sorry.  I wish I knew more.  

So happy to hear you are NED.  Fantastic news.

Please let me know if I can help at all.
Best wishes,
Rachael
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Guests Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2016 at 5:56pm
Jeree.Im praying for you. Dont give up hope. Read through all the forums on this website. There are so many different trials and good results. Keep researching. In the cancer centers in most big Hospitals ther is usually someone on staff whos nob it is to match up cancer patients with new treatments and trials. I just found out there is one at the cancer ctr. Where I go. So ask your oncologist or his nurse. Cancer Care Alliance does that for people too.
     I just want to say We are here for you too. You can vent frustrations here and share whatever you are feeling. Just keep checking all the discussions on this forum. There is even a search option up at the top.right of each discussion page. Im sending you a cyberhug
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Guests Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2016 at 6:19pm
Can someone tell me what Tm is.?
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RachaelSouthEast View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote RachaelSouthEast Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2016 at 6:46pm
Hi romnessprite1.  It's Tetrathiomolybdate.  Hope that helps.

Rachael
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