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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
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 [/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
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