HonCode

Go Back   HER2 Support Group Forums > Clinical Trials
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 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.
bevilj is offline   Reply With Quote
Old 01-29-2013, 02:58 PM   #2
chrisy
Senior Member
 
chrisy's Avatar
 
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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
chrisy is offline   Reply With Quote
Old 01-29-2013, 05:06 PM   #3
karen z
Senior Member
 
Join Date: Apr 2008
Posts: 1,476
Re: starting T-DM1 - what to expect?

I expect a lot of folks will get back to you with useful advice and info!
K
karen z is offline   Reply With Quote
Old 01-29-2013, 11:54 PM   #4
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,802
Re: starting T-DM1 - what to expect?

Jen,

Below is a recently updated thread on the subject:

http://her2support.org/vbulletin/sho...ighlight=T-DM1

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.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundless(granules?) nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 01-30-2013 at 12:43 AM..
Jackie07 is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 05:11 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2019, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter