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Old 03-04-2012, 01:23 PM   #3
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: TDM1-Are my Side Effects Normal?

Hi Nelly,
I was on TDM1 for a long time, and experienced many of the S/E you describe. Low platelets is probably the most common one. Many people (myself included) also have elevated LFT's. I'll comment below by line on my experience:

-migraine/headache in left temple (uncomfortable pressure inside head) - Not exactly, but I did have mild headache/flulike symptoms 2-3 days after infusion.
-chest pressure I did not experience this
-joint pain (mild) - I did have this
-heavy and multiple periods (during 1st treatment) I was post menopausal, so don't know
-blood work showed extreme elevation in liver enzymes (one wk/post treatment) Whoa baby, yes I did. AST was off the chart, with ASL and ASP also elevated.
-low white cells and platelets WBC not so much, but platelets yes
-shedding(very light but noticeable) Well, I didn't NOTICE it

I also had, day 4 of my first infusion, pain at tumor site. I wonder, does the chest pressure seem like it might be that? I'd get that checked out if not.

Overall, in the grand scheme of things, TDM1 is NOT as easy as plain vanilla Herceptin, but is far far more tolerable than traditional chemos. Also to consider, if you are in the Pertuzumab arm there could be additional side effects.

Hang in there!
__________________
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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