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starting T-DM1 - what to expect?
Hi,
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.
Jen
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6/09 - self exam - lump!
8/09 –Dx - IDC, left breast. Suspicious mass,right breast (more testing required).
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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