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Old 08-17-2009, 08:58 AM   #11
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: TDM1 Trial Participants: I Need Advise

Hi Carolyn,

My first infusion was an all day affair (the study required a long period of "monitoring") and by the time I was headed home I did have fever/chills. When I called the doctor she said to take an ibuprofen which worked great. I was back at work the next day. I also had an episode on I think day 3 of acute pain in my liver (which was the site of the tumor) which lasted a few hours then was fine. But I haven't heard of anyone else having THAT happen.

For the first treatment, you could certainly make it home but might consider staying overnight in town if possible, just because it's a long day. On the other hand, there's nothing like sleeping in your own bed!

With subsequent treatments I feel tired but not unwell on infusion day (it may have something to do with having to get up and leave the house 3hrs earlier than usual). A few days later I get a lowgrade fever and headache which I either tough out or kill with an ibuprofen.

Ongoing, you should be able to go home without problems after infusion - I drive 2 hours home afterward and have also traveled by plane afterwards on numerous occasions.

There are no premeds, and overall I have to agree with Barbara H and Irene, this is a very tolerable drug.

As to the locations, keep asking about other locations; the trial I was in at UCSF was never included in the official list of locations. But I agree, if you're close to getting in one, grab it. Once you're in, especially if you are doing well you may be able to make changes.

Also, remember the scans are not to DQ you (although you will have to pass the ECHO/MUGA!), they are to get baselines for evaluating the effectiveness of the treatment. They have to be done within 2wk prior to starting the trial.

Hang in there, sounds like you're getting close!
Chris
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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; 08-17-2009 at 09:01 AM..
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