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Old 11-17-2014, 12:26 AM   #1
clare147
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kadcyla
ive just been diagnosed with secondary breast cancer thats metasistes into my lungs they are going to start me on a chemo drug called kadcyla has anyone had it on it that can give me any information
what are the side effects
what side effects have you had
how long are you on it for
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Old 11-19-2014, 03:10 AM   #2
michka
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Posts: 858
Re: kadcyla
Kadcyla saved me in april 2012 and I am still on it. This is the first thing to consider. It does not always work but has good results.
I read your other post and understand your fear of side effects. For many women it is easy, for others it is not. It is not easy for me (nausea,fatigue, dryness, neuropathy) BUT nothing to do with my first chemo (FEC). And you will keep your hair. So you can do it. And if it works and unfortunately it is tough on you, you can ask to lower the dosage. Stay strong, we are with you. Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 11-19-2014, 09:18 AM   #3
Ceesun
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Re: kadcyla
My thoughts on kadcyla are similar to Michka. I was on it for 14 months and it did clear my lungs (left clear and right marked decrease) but I don't think I will be on it going forward. I found it to be a rough ride, but don't worry many women breeze through it...you can do it! Your oncology team will help you with any side effects you may have. Good Luck, Cathy
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Old 11-19-2014, 11:34 AM   #4
clare147
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Re: kadcyla
what do you mean by dryness is that dry mouth
i saw my oncologist today and she gave me a list of side effects for kadcyla and they dont seem to bad
im hoping im ok with the side effects as just found out got to have for rest of my life
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Old 11-19-2014, 12:33 PM   #5
michka
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Re: kadcyla
I mean dry eyes, nose and mouth.
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 11-19-2014, 04:05 PM   #6
Ceesun
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Re: kadcyla
I had dry mouth and eyes and a slight bloody nose a few times.
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Old 12-09-2014, 11:57 AM   #7
KeriK
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Re: kadcyla
I have been on kadcyla for almost 2 yrs. the first few treatments were extremely rough for me. Achy hips, stomach cramps, nauseated. But it did get easier.
I make sure to take my zofran, Zantac, Allegra when I get home and Advil
Best of luck
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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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Old 12-09-2014, 12:47 PM   #8
clare147
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Re: kadcyla
I am due my second one next week my first one wasn't to bad felt really tired felt like I had a bad cold got stomach pains quite a bit and a bit achy
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Old 12-16-2014, 06:43 PM   #9
GJeanette
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Re: kadcyla
I started Kadcyla in September. Just had my fifth infusion. BC Mets to my lungs. Tumor markers have decreased from 24 to 13. I have dry mouth and eyes also. Some constipation but drinking lots of water and fiber helps that.
My oncologist is watching liver enzymes, which is okay now. Does anyone take anything to support your liver while you are taking Kadcyla? I will ask my MD next visit but just wanted to check with others. Thanks.
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