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Re: Palliative vs. Curative Intent
Thanks, everybody. I appreciate the encouragement, and the research paper from Kim. The paper is very informative and helpful. The radiation people haven't told me the type of radiation they're doing, but it's like what the paper describes.
I am, indeed, oligometastatic. I haven't spent much, if any, time at NED, but I've had pretty good control over everything but my lungs. Initial mets were to lungs and liver. Liver mets cleared up on first round of treatment and have stayed gone. One bone met surfaced while I was getting only Herceptin and Arimidex. I'm no longer ER positive, so hormone therapies are out for me.
My med onc is young and seems pretty positive and optimistic, but I had the pneumonia in Philadelphia, so she didn't have direct data. The hospital in Philly sent my records to her. But the first time I saw her after I got back she was questioning whether I had "really" had an infection. Did I have a fever? (Yes) Did I feel sick? (Yes, horrible) Did I get better with the antibiotics? (Yes indeed) She also chose that session to ask about end-of-life planning and recommend I meet with the palliative care team.
That had me a bit freaked out. And the feeling isn't entirely gone. The NP I saw two days ago again asked questions directed at the "Is it really an infection or is the cancer getting worse?" question. The Philly hospital did a sputum sample. Seems like that would confirm the infection. Plus I've had two flare-ups since June and have responded well enough to antibiotics to keep me out of the hospital.
My medical onc didn't refer me to radiation oncology until August 5. I was leaving the next day for 11 days, so I didn't have my first consultation with them until August 22. I started radiation treatment September 6.
I have always realized that I am the one who cares the most about my own health, and I am the one who knows my body best. I don't mind being in charge, and I often take charge. My NP seems to be more on board with a "long view" management plan for me than her boss does, and I see the NP every three weeks (though she's about to go on maternity leave, so I'll have a new NP for a few months.)
Onward. . . .
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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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