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vqtilley · 11-25-2015, 07:50 AM

Hi CoolBreeze - So sorry to hear you've been going through such a hard time! The pain factor sounds dreadful and the cachezia must be a major battle. But I'm glad you're on Kadcyla. Not to generalize, of course, but I had a major progression last April after three years on Herceptin and TDM-1 turned it around completely: my suddenly growing lesions in axilla, breast, lung, bone all shrank, vanished or went dormant. No sign of CNS recurrence, either, which was the big worry after my cerebellum lesion last January. I did have a lot of trouble with nausea on Kadcyla for a while: we tried all the usual anti-emetics, even a cannabis derivative, nothing really worked and I was miserable, but after a few months the nausea just lifted and disappeared, I think as my system simply adjusted to the drug. My lasting s/e on Kadcyla is fatigue. I still have about 2/3rds of a day's worth of energy which is sometimes hard to manage with my job. But the cancer is under control, so that's what counts. Good luck, stick it out ... keep us posted?

11-25-2015, 07:50 AM	#39
vqtilley Member Join Date: Mar 2015 Posts: 13	Re: Kadcyla Side Effects Hi CoolBreeze - So sorry to hear you've been going through such a hard time! The pain factor sounds dreadful and the cachezia must be a major battle. But I'm glad you're on Kadcyla. Not to generalize, of course, but I had a major progression last April after three years on Herceptin and TDM-1 turned it around completely: my suddenly growing lesions in axilla, breast, lung, bone all shrank, vanished or went dormant. No sign of CNS recurrence, either, which was the big worry after my cerebellum lesion last January. I did have a lot of trouble with nausea on Kadcyla for a while: we tried all the usual anti-emetics, even a cannabis derivative, nothing really worked and I was miserable, but after a few months the nausea just lifted and disappeared, I think as my system simply adjusted to the drug. My lasting s/e on Kadcyla is fatigue. I still have about 2/3rds of a day's worth of energy which is sometimes hard to manage with my job. But the cancer is under control, so that's what counts. Good luck, stick it out ... keep us posted? __________________ Feb 2012: diagnosed with 1 cm lesion rt breast, DCIS left breast, Stage IV ER+/HER2+ Apr 2012: bilateral partial excisions; confirmed met to left proximal femur, long gamma nail inserted to stabilize femur: May 2012: radiation to femur: chemo with Trastuzumab + taxane. July 2012 thru Mar 2015: started maintenance regime Herceptin+Arimidex+Denosumab, NED May 2014: recurrence in right acetabulum: 15 fractions radiation Jan 2015: lesion in left cerebellum: resection & gamma knife treatment Mar 2015: major general progression; small mets confirmed in rt axilla, rt breast, T7 vertebra, possible met as isolated spiculated pulmonary nodule left lung[LIST][]27 Mar 2015: start Kadcyla, discontinue aromotase inhibitors; within two weeks axilla/rt breast lesions are shrinking noticeably[]18 April: resume letrozole []May: all lesions disappeared or dormant[]June - discontinue Kadcyla due to low platelets[*]Aug & Nov 2015 MRI brain/spinal scans all negative for CNS disease: no recurrence to date Fall 2015 - stereotactic radiation to lingering T3 lesion to relieve pain; 90% effective within weeks July 2019 - discontinued Letrozole due to side effects April 2020 - short course steretactic radiation to 2 cm lesion in upper left lung; subsequent scan finds it reduced Mar 2021 - 6.5 cm mass found in left lung; FISH finds it is PR-, ER- and strongly HER2+. 16 April 2021 - Resume Kadcyla.