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Old 11-24-2015, 06:13 PM   #1
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: Kadcyla Side Effects

After two years of remission with only perjeta/herceptin, cancer exploded all through my abdomen and lungs. Pain was intense and I was getting pretty sick. Nov 8 I did my first Kadcyla. I had a rough ten days (nausea, pain, fatigue, constipation, heartburn, headaches, not able to walk) but am feeling better. Abdominal pain is much better and I've been on heavy duty pain killers and I am backing off. I'm not sure if it's because they changed my meds or if TDM-1 is working.

I get my 2nd tx December 2, so I'll see what it does to blood and liver then. Am going to need some better anti-nausea with this and a heartburn med. I'm at the point where I have anorexia-cachexia and I can't eat and am down in the 80s which is a bad sign. I'm hoping I get miracle #2 with Kadcyla as my son is getting married in May.

This is my 8th chemo and I've been in continuous treatment for six years, so I don't think anything would be easy at this point. But I'll take it for now.

Thanks for sharing your experiences.
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http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 11-24-2015, 06:46 PM   #2
phil
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Join Date: Nov 2010
Posts: 393
Re: Kadcyla Side Effects

lorraines s/e got better after 3 cycles or so . I know u know this , but u need nourishment to help keep bone marrow strong, blood counts up - juicing etc. to keep kadcyla going . keep anti estrogen tx - zometa to block that pathway . we used paleo diet , (steak, greens ) whole pineapple weekly ,( heard bout papaya but didn't use it ) to get 7 full strength doses in , as plats went below 50,000 for awhile. we pushed for aggressive tx. because of good response . markers dropped right away , and could see cancer disappearing at ct scan after 3 or 4 doses . did a trick a couple times - took a 15 ' brisk walk just before blood draw , raised plats 10,000. did reluctantly have to reduce dose to 3.0, but still cancer went away . Here's Praying the same for you
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Old 11-25-2015, 07:50 AM   #3
vqtilley
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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?
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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.
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