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Old 01-29-2013, 12:05 PM   #1
Join Date: Oct 2010
Posts: 18
starting T-DM1 - what to expect?


I'm scheduled to start on the T-DM1 trial next week and am wondering what I am in for. I have googled and read several articles but am really interested in hearing from people who have participated in the trial to get a good picture of what's ahead.

I'm always told that with every treatment that the side effects will be minimal, yet I seem to experience a ton. I wound up in the hospital after my first infusion of TCH and had a rough go on Xeloda. Tykerb wasn't that bad but wasn't without it's issues. For those of you who take, or have taken T-DM1, what have things been like for you?

Have you been able to work while in treatment and be active? I'm currently on medical leave from work - holding over from recent gamma knife and fractionated brain radiation. Mentally and physically, I don't think I'm ready to go back...but if I was up for it, it is doable?

I've read different things about success rates on this treatment also. Wondering how long you've been able to get T-DM1 without progression? Or how long did you take it before you knew it wasn't working for you? I'm anxious to get started as I haven't been feeling well for awhile and I'm hoping this is the magic plan that works for me.

Thanks in advance for sharing your stories.
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9/09 - Double mast/cholecystectomy /nodes removed. IDC confirmed, right breast. liver/bone mets. ER-/PR -/Her2 +. BRCA 1/2 -.
10/09 - Started Taxotere, Carboplatin, Herceptin, Zometa. Hospitalized with Tetany.
1/10 - Finished Taxotere, Carbo, continued Herceptin, Zometa. PET/CT - improvement.
2-3/10 - Rads (25 rounds).
8/10 – inflammation vs. malignancy?
1/11 – progression. started Xeloda.
9/11 – progression. pancreatitis or tumor? Chest ‘rash’ appeared.
10/11 – confirmed pancreatitis. Halted Xeloda.
11/11 – skin mets confirmed.
12/11 - started Tykerb, back on Xeloda.
1/12 – cut Xeloda dose in ½. skin mets fading!
4/12 - no more Xeloda. skin mets resolved.
8/12 - brain mets found.
9/12 - gamma knife and fractionated brain radiation.
1/13 - progression throughout body. brain mets shrunk/resolved. no more Tykerb.
2/13 - starting T-DM1 trial.
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Old 01-29-2013, 02:58 PM   #2
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Re: starting T-DM1 - what to expect?

I was on TDM1 for over 3 years. Side effects for me were mainly flu-like symptoms that night and next day (mild fever, achy) and it did a number on my liver enzymes and platelets but those were not symptomatic. A couple days after my first infusion I had pain at tumor site which for me was a welcome sign that it was working.

To be honest, other than being knocked out the night of infusion (which actually worked out great because I could board a red-eye flight somewhere crazy and actually sleep on the flight!), I felt great on TDM1. Worked VERY full time, vacationed, was totally "normal".

After TDM1 I've had a horrible time with xeloda, taxol, you name it. So in my experience TDM1 was a dream.

Hope it will be so for you as well.
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
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Old 01-29-2013, 05:06 PM   #3
karen z
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Re: starting T-DM1 - what to expect?

I expect a lot of folks will get back to you with useful advice and info!
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Old 01-29-2013, 11:54 PM   #4
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Re: starting T-DM1 - what to expect?


Below is a recently updated thread on the subject:


If you post on that thread, everyone who had posted ont it would be notified (unless they had chosen not to). The 'Her2' Board also gets more traffic and is more visible.

As for going back to work - usually you will need a doctor's note specifying that you can work. My neurosurgeon back in 1990 had written a note stating that I should work 2 hours a day first week, 4 hours a day next week (if I did well), ... 'depending on her condition'...

The benefit of returning work early is that you will be more active both physically and mentally besides the income and sick leave consideration. One of the 'cons' of going back to work 'too' early is that mistakes you happen to make might give people the wrong impression... With computers these days, you might check the possibility of working from home (telecommuting) first.

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Last edited by Jackie07; 01-30-2013 at 12:43 AM..
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