HER2 Support Group Forums - View Single Post - TDM-1 side effects

Shaysmom · 02-12-2013, 11:52 PM

Hi All,

So glad to read the side effects . Tdm1 is my 11th chemo. I have ovarian mets, lung nodules, effusion, adrenal mets, large mediastinal lymphnode that compresses my esophagus plus others, lymph node bw stomach and liver, stomach mets and possible colon mets. GI mets have me losing 60 pounds in one year.

I'm about to have my third tdm1 effusion. I'm on Teresa trial since 3/2012 but was on physicians choice arm which was Gemzar and herceptin. That gave me five great months. Then progressed but not 20% so had to stay on Gemzar another six weeks even though every met was larger, six weeks later new mets. But it was 9/2012 and the addendum to allow crossover was not out, in fact univ of PEnn didn't approve it until end Nov.
So I did perjeta, herceptin and taxotere until jan 2013 when I was able to crossover.
CT scan in Dec showed stability. No scans yet on TDM1. I don't scan often. No pet in a year and ct scan every three months except when requires more frequently by trial. Brain scan was year ago. Tumor markers are unreliable have been normal always.

I always get odd side effects. TDM1 for me has caused headaches, severe dry eyes and blurry vision. Sore throat one day after tx, dry mouth and horrible leg cramps and pain in my hips. Blood work is good. Chest heaviness and fatigue.
My body is beat up. I sleep every day I nap, some days I can't get out of bed. Always have two days of the chest heaviness. Scared me this Sat so happy others have it and eye issues bc I need better drops. First cycle they thought it was pink eye but now I know it's not started up right after second tx, they are dry and itch.
Blood work is OK. Echo was fine.
I am almost out of drugs and I want to see my son turn 13 this summer. He has been having anxiety with me and want to get him more support.
How bad were headaches with this . I may ask for brain scan but if its positive I lose TDM1. Wish it was approved so I didn't feel like I was giving up my shot at it. I have about 3 days with bad aches over the 21 days. Not every day. They are diffuse.

Thanks
Kelly

02-12-2013, 11:52 PM	#95
Shaysmom Member Join Date: Dec 2010 Location: South Jersey USA Posts: 10	Re: TDM-1 side effects Hi All, So glad to read the side effects . Tdm1 is my 11th chemo. I have ovarian mets, lung nodules, effusion, adrenal mets, large mediastinal lymphnode that compresses my esophagus plus others, lymph node bw stomach and liver, stomach mets and possible colon mets. GI mets have me losing 60 pounds in one year. I'm about to have my third tdm1 effusion. I'm on Teresa trial since 3/2012 but was on physicians choice arm which was Gemzar and herceptin. That gave me five great months. Then progressed but not 20% so had to stay on Gemzar another six weeks even though every met was larger, six weeks later new mets. But it was 9/2012 and the addendum to allow crossover was not out, in fact univ of PEnn didn't approve it until end Nov. So I did perjeta, herceptin and taxotere until jan 2013 when I was able to crossover. CT scan in Dec showed stability. No scans yet on TDM1. I don't scan often. No pet in a year and ct scan every three months except when requires more frequently by trial. Brain scan was year ago. Tumor markers are unreliable have been normal always. I always get odd side effects. TDM1 for me has caused headaches, severe dry eyes and blurry vision. Sore throat one day after tx, dry mouth and horrible leg cramps and pain in my hips. Blood work is good. Chest heaviness and fatigue. My body is beat up. I sleep every day I nap, some days I can't get out of bed. Always have two days of the chest heaviness. Scared me this Sat so happy others have it and eye issues bc I need better drops. First cycle they thought it was pink eye but now I know it's not started up right after second tx, they are dry and itch. Blood work is OK. Echo was fine. I am almost out of drugs and I want to see my son turn 13 this summer. He has been having anxiety with me and want to get him more support. How bad were headaches with this . I may ask for brain scan but if its positive I lose TDM1. Wish it was approved so I didn't feel like I was giving up my shot at it. I have about 3 days with bad aches over the 21 days. Not every day. They are diffuse. Thanks Kelly __________________ 10/01 dx stage III breast CA, 10/01-8/02 mastectomy, chemo, XRT 10/02 total hysterectomy 10/02 dx with mets to ovaries 10/02-10/09 Herceptin, cancer NED or stable 11/09 dx mets for 3cm medisternal mass, start Xeloda and Herceptin 07/10 dx with mets to adrenal gland and suspicious nodules in pleural stay on Xeloda and watch 11/10 more progression 12/10 start Abraxne Herceptin once week 3 weeks one week off. 10/6/11 PET showed adrenal is very active and new mets in internal mammary 11/1/11 Start tykerb and Aromasin 2/2012 endo dx stomachmets. 3/2012 randomized to non tdm1 arm of Teresa trial. Started Gemzar 7/27/2012 progression but too small to switch 9/10/2012 now new lymphnode b/w stomach and liver off Gemzar Still no TDM1 crossover 10/3/2012. started perjeta, herceptin, taxotere 12/2012 losing weight from constant big D, scans are stable 1/3/2013 start TDM-1 xover for Teresa trial.