HER2 Support Group Forums - View Single Post - Has anyone been on TDM-1 for more than 2 years?

KeriK · 02-21-2014, 12:47 PM

Hi my kadcyla sisters
I've been on it for 14 months, 3.6 dose and have only missed one treatment when I had opherectomy I had that done due to my very heavy and never ending periods! Ugh so no more periods, now just menopause symptoms. I have gained 17 lbs since going into immediate menopause!! With no changes in diet or exercise!! Is it kadcyla or what???
My main s/e is dry mouth dry eyes, blurred vision. My last scan, 12/13, showed colitis too.
My newest s/e over the last 6 wks has been constant joint pain. I have always had it the first few days after infusion, but lately it's not going away!!
My liver counts have always been in the 20's. I do take milk thistle, drink dandelion tea and wheat grass shots twice daily. I read a lot about those helping to detox the liver
And to help my heart and breathing, I take coreg twice a day, diovan once a day for heart protection and make sure I walk, bike or swim at least 30 mins a day, 4 times a wk. I had major issues w ef decrease on herceptin but no problems w tdm1

02-21-2014, 12:47 PM	#20
KeriK Senior Member Join Date: Jan 2014 Location: Las Vegas Posts: 26	Re: Has anyone been on TDM-1 for more than 2 years? Hi my kadcyla sisters I've been on it for 14 months, 3.6 dose and have only missed one treatment when I had opherectomy I had that done due to my very heavy and never ending periods! Ugh so no more periods, now just menopause symptoms. I have gained 17 lbs since going into immediate menopause!! With no changes in diet or exercise!! Is it kadcyla or what??? My main s/e is dry mouth dry eyes, blurred vision. My last scan, 12/13, showed colitis too. My newest s/e over the last 6 wks has been constant joint pain. I have always had it the first few days after infusion, but lately it's not going away!! My liver counts have always been in the 20's. I do take milk thistle, drink dandelion tea and wheat grass shots twice daily. I read a lot about those helping to detox the liver And to help my heart and breathing, I take coreg twice a day, diovan once a day for heart protection and make sure I walk, bike or swim at least 30 mins a day, 4 times a wk. I had major issues w ef decrease on herceptin but no problems w tdm1 __________________ [/SIGPIC]37 years old 12/10 her 2+, ER+ invasive ductile carc stage 3C 1/11 taxol herc 12 wks 4/11 FEC herc 12 wks 8/11 masectomy 48 lymph nodes removed 9/11 tamoxifen 10/11 radiation thru Dec 11/12 recon! 12/12. It's back. :( mets to liver and lungs Stopped tamoxifen 1/13 TDM1 expansion trial 4/13 lung mets gone 65% reduction in liver markers in low teens! 12/13 lungs still clear! Liver mets reduction 12/13 opherectomy 1/14. Tumor markers increasing. 30's now 2/14 TMs back in high teens 4/14 increased calcium levels 5/14 Xgeva to kadcyla. Scan showed tiny scar tissue on sternum, not previously ever seen 8/14 NED 12/14 NED!! 4/15. NED. YAY! Dr thinking about stopping kadcyla 7/15 still NED. LAST KADCYLA SCHEDULED FOR 9/3 8/15 left side of tongue and lips went numb, brain MRI revealed 10 lesions all over the brain. :( 8/15. Tumor markers still in high teens ??? 8/15. 15 rounds of Whole Brain Radiation Started an Alzheimer's medicine, Namenda, to help preserve brain cognition. 9/15 started Afinator and Tykerb 10/15. Brain MRI. 7 rumors left, nothing new, nothing growing 12/15. 3 sessions of cyber knife 3/16 MRI stable. Nothing new nothing growing nothing shrinking 5/16. MRI. 4 existing tumors doubled in size and 2 new tumor Looking into clinical trials 6/16. 6 2 hr sessions of cyber knife 10/16 stable MRI 11/16 back in the body.......lungs liver lymph nodes sternum 11/16 abraxane herceptin xgeva 12/16 lungs clear but now 2 tumor in liver 2/17 Opdivo ibrance Tykerb xgeva