Go To Main TNBC Website


  New Posts New Posts RSS Feed - Navigating Clinical Trials
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Navigating Clinical Trials

 Post Reply Post Reply
Author
VDM View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 13 2016
Location: Charleston, SC
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote VDM Quote  Post ReplyReply Direct Link To This Post Topic: Navigating Clinical Trials
    Posted: Oct 13 2016 at 4:39am
Dear All, this is my first time posting. I cannot tell you how helpful the website and forums have been to me. I was diagnosed Stage IIB TNBC in April 2015. Had 4 rounds Taxol/Carboplatin, which shrunk left breast tumor almost immediately, then 4 rounds adriamyacin/cytoxen during summer 2015. Had double masectomy Oct 2015/had expanders put in. Did not have CPR - my tumor went from 5x3 cm to less than 1x1. Surgeon removed two lymphnodes - one had trace amount of the cancer. I then did 22 rounds of radiation. Had reconstruction surgeries in March and May 2016. In July of 2016, I noticed a nagging pain I. My upper left back. Scans in mid August revealed lesions in both lungs and a tumor between my 3rd-4th ribs on left side. So I amStage IV with lung and bone mets. My oncologist referred my to two TNBC specialists in neighboring state for second opinions/info on available trials. Before going off to meet with those two docs, I signed co sent forms with my doc's office to test my tissue for METRICS trial and for Androgen receptors. WhenI signed those consents I understood that I was signing consents to have a biopsy and have tissue tested for eligibility. I happily signed. I met with the first referral doc on Tues - informed her that I was meeting with her colleague at a competing institution on TH - and ask for guidance learning about trials and next steps. We discussed four trials - one she was doing that was targeted therapy and chemo, the METRICS trial - I told her I had already consented to have tissue tested for that - she said "if you qualify it's a good 2nd line for you" - and we discussed two immunotherapy trials. She introduced me to their clinical trial nurses and set up a meeting. I agreed to have my tissue tested fir the targeted therapy trial and signed docs. Two days later I met with 2nd doc. She knew about my meeting two days earlier. We discussed the same four trials. I told her of the consents to test tissue. Her office was doing one of the immunotherapy trials, I told her I wanted to see if I was eligible. I met with her clinical trials nurses and filled out what I understood was a consent to a biopsy (because none of these docs could use the archival tissue!! Each had to have her own sample) to be tested to see if I even qualified fir her trial. I went home and met with my local oncologist to wade through all of the materials. He helped me make a matrix - if I can do this one, then this will be first line and if I can do that then this will be 2nd line. No one ever indicated that I was not going about this the right way. In fact, everyone seemed supportive and happy to help me see what I qualified for. At a later date, when scheduling a biopsy at one of the places, the doctor became infuriated to find out that I was being tested for other trials -- first she acted like I had not told her about the testing for METRICS and Androgen and then she acted like it was improper to be doing what I was doing. She made me feel awful - I told her I was not a doctor, this was all new to me and I was just trying to prolong my life (I am 47 and have sole custody of my 11 and 9 year old). Anyway, she told me I was disqualified from testing for eligibility for her study, which was one of my top two choices. My local doctor was surprised by this. I cannot sleep over it. I am waiting for results to come back for the immunotherapy trial and am going to try and get my treatment t underway asap. If anyone can shed some light on this process and/or my experience it would be helpful. I cannot tell if I violated rules and regulations or if I got caught up in egos and politics. Thanks for any insight. If anyone reading has questions about my treatment, reconstruction, etc ask away. I am an open book.

Edited by VDM - Oct 13 2016 at 4:48am
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12568
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 13 2016 at 10:59am
VDM,

First of all let me applaud you for researching and seeking other opinions.  You did exactly what I would have done, seeking advice on all your options.  It sounds like your first onc was even supporting you in the search and helping you understand your choices.  I'm not aware of any protocol you violated, it seems like the egos of some oncologists have gotten in the way of what's best for the patient.  

Do you know Steve (SagePatientAdvocates)?  He's a patient advocate and has helped many of us.  Please send him a private message.  If he doesn't know, he may have a resource to help you through this process.  Wishing you the best.  Please let us know what you find out and decide for your next line of treatment.

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
VDM View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 13 2016
Location: Charleston, SC
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote VDM Quote  Post ReplyReply Direct Link To This Post Posted: Oct 13 2016 at 11:07am
Donna, thank you very much. I will message Steve. VDM
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 4881
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Oct 13 2016 at 12:37pm
Steve has helped so many here and his insider knowledge of who, where, how is incomparable.

I would only add, trust yourself, you have good instincts and you've done so much hard work to jump in here and work your way through this quagmire. This one onc is in the wrong. There's only one way to deal with all these decisions and factors and that's to leave egos at the door and join your team.

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
Sara414 View Drop Down
Newbie
Newbie


Joined: Jan 25 2017
Location: Owensboro
Status: Offline
Points: 24
Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara414 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2017 at 3:47am
How do you find Steve?
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12568
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2017 at 11:20am
Sara,

Search the Memberlist for "SagePatientAdvocates".  This is Steve's username.  Send him a Private Message and he will get in touch with you.  If you have problems contacting him, let us know.  He usually responds quickly.

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
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.