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Old 05-12-2017, 04:24 PM   #14
Mtngrl
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Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: New Plan

Update: The tumor board looked at the Foundation One report and saw things that might indicate I'm becoming resistant to HER2 antibodies. They said I should do a tyrosine kynase inhibitor instead of H&P. There are a couple of new tyrosine kynase inhibitors in development, but in the land of approved drugs there's only Tykerb. I wanted Herceptin, Tykerb, and a chemo drug (such as Navelbine). My oncologist says there's no study supporting that combination; I could have Tykerb and Navelbine or Herceptin, Tykerb, and Xeloda. I picked the former, because Xeloda was not super-effective for me.

I had a CT scan and bone scan 5/8, and learned 5/10 that everything's pretty stable. I've been getting just Herceptin and Perjeta since March. So apparently that is a decent "maintenance treatment" for me, despite the tumor board's concerns. Good to know.

I thought I'd start the new regimen on 5/10 but it didn't have insurance approval at that time, so I got another 3-week dose of H&P. While I was there I asked the chemo nurse whether she'd be willing to give Navelbine (a vesicant) without a port, and she said she'd rather not. If it leaks into your skin, it can do a lot of damage.

Alrighty, then. Chest port it is. I will get it placed on 5/31, then have my first Navelbine infusion the same day. Tykerb is a pill.

I'm actually quite pleased about the scan. HER2+ cancer is normally aggressive, but mine's kind of lazy, and I'm delighted.

Here's the back story on the Navelbine. Years ago, a different oncologist prescribed it, and the RN countermanded it. She told me the same thing as the treatment nurse I talked to two days ago. When my current oncologist suggested Navelbine I remembered what the first nurse had said, and I asked her if I needed to get a port. She said she didn't think so.

I guess "it takes a village" to get cancer treatment right. Pay attention, everybody, and be careful out there.

http://chemocare.com/chemotherapy/si...reactions.aspx
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Amy
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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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