One under your belt
Hey Irene,
Sorry your first DM1 infusion hit you so hard! My first one also knocked me for a loop - I had a fever for 'only' about 3-4 days (although it's hard to tell with me because I usually run very cold!). It did get better after a few, now I feel punk only for THAT DAY!.
You mentioned you had pain. Remember one of the possible side effects of regular Herceptin is "pain at tumor site" so maybe that is what you are experiencing. I never had any pain with regular herceptin, but I had one helluva bad pain in my liver about 3 days after my first infusion. At the time, I wanted to attribute it to screaming cancer cells...and as it turns out, I think that was true!
Good luck on your next tx.
Oh, I forgot, I also have had an ongoing battle with my liver function tests. Most people get elevated enzymes which come back down at least somewhat. Mine now pretty much live at about 2x ULN. Not symptomatic at all, but as you say, your liver is working very hard - maybe on screaming cancer cells there.
Wishing you much success with this new treatment and of course as always, hugs and lots of love.
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
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