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If I were an administrator I'd make this a sticky, or start a new "department."

I was on Kadcyla for nearly 10 months, from May, 2013 to February 2014. Fairly early, I developed some breathing problems, and the lung inflammation that I had first noticed while on Herceptin and Tykerb got worse. I looked up the side effects online and noted that interstitial lung disease, pneumonitis and acute respiratory distress are listed. We lowered my dose.

From the beginning, liver enzymes were elevated and platelet count was decreased. My other side effects were high blood pressure, neuropathy, headache, nausea and watery eyes/runny nose (which I've had the whole time I've been on Herceptin or Kadcyla.) My ejection fraction was not negatively affected.

I've been off Kadcyla for five months. Liver enzymes are still elevated and platelet count is still on the low side. I still have lung inflammation, though my symptoms have improved. The neuropathy is almost all cleared up. My blood pressure is back to normal.

How about other people who've been on Kadcyla? How was it for you?

__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb

07-23-2014, 11:21 AM	#1
Mtngrl Senior Member Join Date: May 2011 Location: Denver, CO Posts: 1,427	Kadcyla Side Effects If I were an administrator I'd make this a sticky, or start a new "department." I was on Kadcyla for nearly 10 months, from May, 2013 to February 2014. Fairly early, I developed some breathing problems, and the lung inflammation that I had first noticed while on Herceptin and Tykerb got worse. I looked up the side effects online and noted that interstitial lung disease, pneumonitis and acute respiratory distress are listed. We lowered my dose. From the beginning, liver enzymes were elevated and platelet count was decreased. My other side effects were high blood pressure, neuropathy, headache, nausea and watery eyes/runny nose (which I've had the whole time I've been on Herceptin or Kadcyla.) My ejection fraction was not negatively affected. I've been off Kadcyla for five months. Liver enzymes are still elevated and platelet count is still on the low side. I still have lung inflammation, though my symptoms have improved. The neuropathy is almost all cleared up. My blood pressure is back to normal. How about other people who've been on Kadcyla? How was it for you? __________________ Amy _____________________________ 4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++ 4/29/11 CT scan shows suspicious lesions on liver and lungs 5/17/11 liver biopsy 5/24/11 liver met confirmed--Stage IV at diagnosis 5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX) 7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy 8/29/11 CT scan shows no new lesions & old lesions shrinking 9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex 10/17/11--Brain MRI--No Brain mets 12/5/11 PET scan--Almost NED 5/15/12 PET scan shows progression-breast/chest/spine (one vertebra) 5/22/12 Stop taking Arimidex; stay on Herceptin 6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo) 9/24/12 CT scan--No new mets. Everything stable. 3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger. 4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed. 4/30/13 Begin Kadcyla/TDM-1 8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla. 11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive. 11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion. 2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1. 2/28/14 Begin Herceptin/Perjeta every 3 weeks. 6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better. 8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid. 9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks. 12/11/14 PET Scan--no new lesions, and everything looks better than it did. 3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid. 4/13/15 Increasing Xeloda dose to 10 days on, one week off. 7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13. 10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved. 12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16. 1/27/16 PET scan shows cancer is stable. 5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans. 6/3/16 Begin Kadcyla and Tykerb combination 6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia. 7/15/16 Begin Kadcyla only every 3 weeks. 9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia. 10/3/16 Last of 12 radiation treatments to right lung. 11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone. 11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse. 11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off. 3/6/17 Scan shows progression in lungs. Bone met a little better. 3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment. 5/31/17 Port placement 6/1/17 Start Navelbine & Tykerb Last edited by Mtngrl; 07-23-2014 at 12:30 PM.. Reason: I remembered another side effect (high blood pressure)