HER2 Support Group Forums - View Single Post - starting T-DM1

bevilj · 01-29-2013, 12:05 PM

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

01-29-2013, 12:05 PM	#1
bevilj Member Join Date: Oct 2010 Posts: 18	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 __________________ 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.