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Old 08-12-2012, 08:54 AM   #1
Join Date: Aug 2012
Location: Live in Atlanta,Ga
Posts: 7
Going to Nashville for TDM1 trial. Have questions!

I have an appt this Tuesday to go to Nashville to participate in a TDM1 trial. Can anybody tell me what to expect on this first visit? I do not know anything at this point except for what time to be there. They left me a message at home while I was traveling to take my two girls to college!!! How does this work with insurance as well? Since it is a study, how do they bill for all of it? What have been others experiences with TDM1.... Good or bad? Sorry for all the questions. I am just clueless!!!!
Diagnosed Stage IV Breast Cancer in August 2011 Her2+ Er-pr-
Metastic to liver
8 rounds Abraxaine (3 weeks on 1 week off) and Herceptin (once weekly)
April 2012 stopped Abraxaine, Herceptin only every three weeks. (liver and breast tumors shrank considerably but not NED)
June 2012 CT scan showed enlarged axillary lymph node not responding. Biopsy of node revealed same cancer. Surgeon recommended breast MRI. MRI revealed new area in left breast 6mm. Breast biopsy revealed same cancer. Surgeon not sure if we should do surgery.
7/29/12 CT scan to see if spreading anywhere else. Awaiting results to determine plan of care. Will meet with oncologist 8/7/12
8/7/12 no progression in liver. No evidence of disease anywhere else. Dr recommending TDM1 trial in Nashville. Waiting.
9/18/12 Began TDM1 in Nashville. Hopeful!!
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Old 08-12-2012, 01:35 PM   #2
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chrisy's Avatar
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: Going to Nashville for TDM1 trial. Have questions!

I don't know the specifics of the trial you are in, but generally, the study sponsor pays for the investigational drug especially if it is not FDA approves yet, and for procedures which are not considered "standard of care". You/your insurance is billed for standard of care drugs/procedures. You should be able to get specific answers on this from the study folks and possibly the "informed consent" document You will be asked to sign if you haven't already.

For example, I am currently in a study with an investigational drug plus herceptin and taxol. As part of the study they do some extra labs and more frequent echo and ct scans than is normal standard of care. The study pays for the investigational drug and the "extra" labs and tests and my insurance is billed for the herceptin, taxol and "normal" tests. But each study is different, so you definitely want to clarify. Travel costs will probably be on your dime. Overall I'd say not to worry about that too much as the study sponsors structure things so that people are able to participate.

As for what to expect on day1, again that varies by study. Are you just signing paperwork or actually starting treatment? I strongly suggest you call them in advance if possible and find out what the schedule is because if you are starting treatment it is likely to be a Long day as they may do initial doses over a longer periodic time to be sure you are safe.

I was in a TDM1 study (as single agent) and although it was not, for me, a cure it wiped out my liver mets and held it for over 3 years with minimal bothersome side effects and great quality of life. For me I had mild fever/headache a couple of days after infusion. It whacks most poeples platelet counts and for me it increased liver function lab values. But then again, so do most chemos, and worse!

Good luck, TDM1 is a great drug and I know you'll do fine!
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure

Last edited by chrisy; 08-12-2012 at 01:47 PM..
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