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Old 10-30-2017, 11:04 AM   #1
Jkosmas
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Join Date: Nov 2012
Posts: 6
Re: Please post your two cents on Herceptin "side effects" real or perceived!

I am wondering if anyone is still talking about Herceptin Side effects? I am on maintenance treatment of Herceptin and Perjeta every three weeks indefinitely fo rthe maangement of Metastatic HER2+ breast cancer. I have noticed a couple of things the longer I have been on it. Easily fatigued, leg foot and ankle cramps or pain, neuropathy in my right hand and arm, horrible vision, sores and scabs in my nose. Anyone else have similar symptoms? I have also gained almost 30 lbs in two years without any change to my diet.
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11/1/12- Biopsy results confirm Breast cancer
11/2/12- Diagnosed with ER-/PR-/HER2++++ Invasive Ductal carcinoma Stage 2A
12/5/12- Port Surgery and Sentinal Lymph Node Biopsy
12/13/12- Lymph Nodes Biopsy is Negative!! First Chemo Treatment TCH
03/27/13-Last Chemo!
04/02/13-PET/CT Scans, Breast MRI
04/09/13-Test results show complete resolution of tumor
04/17/13-Begin Just Herceptin
05/10/13-Right Breast Mastectomy Scheduled
5/15/13- Right Mastectomy with expander
8/2013- Implant surgery
9/2013- Implant revision surgery
1/2014- Implant Revision Surgery
5/2015- DX Stage IV MBC to Sternum ER-/PR-/HER2+
5/015- Begin 6 months Taxol/Herceptin/Pertjeta
11/2015- Last Chemo!
1/2016- Begin 12 rounds radiation
5/2016- NED!!!
ONGOING- Herceptin/Perjeta Infusion every three weeks indefinitely
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Old 10-30-2017, 11:31 AM   #2
Mtngrl
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Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: Please post your two cents on Herceptin "side effects" real or perceived!

I had foot cramps, runny nose, nose bleeds. No weight gain. I'm about to go back on just H&P, since chemo seems to do more harm than good.
__________________
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
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