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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Update on my lung
Thank you, Cathy! You're my trailblazer, exemplar, guide, and cheerleader. Your remarkable story, and your resilience, inspire me.
This episode has reminded me how important the "human" side of cancer care is. We take our cues about how we're doing from the people around us and their words, body language, and stories. The medical oncologist I had in Boston took the time to educate me about how to interpret scan reports, how to think strategically about treatment, and how to respond to "mixed" reports. Since most of mine have been mixed, that was critically important.
Here's what I think: as much as we'd all love to get into a permanent remission and live to be 115, that's not a likely outcome for most of us. So then what? We know from the clinical trials that "progression free survival" is not a valid proxy for overall survival. Sure, it's nice to be NED for a time, and one's body probably functions better (depending on what is being done medically to maintain that status) than if there were some cancer lighting up, but it is ultimately meaningless. Someone who's never been NED might end up living longer and better than someone who had a run of "remission" followed by recurrence. You never know.
That being the case, it's not necessary to stamp out all evidence of disease. If the cost of doing so in terms of quality of life and overall health is too high, it might be a bad idea. Last winter I was on Abraxane, Herceptin, and Perjeta. I felt ill more often than not. I kept getting urinary tract infections. For several nights after each infusion I had to take opiod pain killers to be able to sleep, because of severe joint and muscle pain. The Abraxane did a good job on most of the detectable cancer in my body, but I felt like it was also sucking the life out of me.
At this point I would dearly love to be breathing well again. I'm hoping once the pneumonitis clears up I will have that. I could be wrong, but I think I have had no new mets since the first time I was on Kadcyla. I think that's fantastic. I'm concerned about that bone met. After years of just sitting there not doing much except take up glucose on PET scans, it's now destroying bone. I want to get that fixed. I hope Eribulin is the answer. If not, maybe surgery or radiation? I'll stay on top of it.
What I don't want is to succumb to some opportunistic infection instead of the cancer itself. I will do my part to rest well, eat well, exercise, laugh, pray, learn, create, and love. My family, chosen and given, will help keep me well in the only ways over which I have any control and in the only way that ultimately matters anyway. Healing and wholeness have to be something other than vibrant, perfect, uncomplicated physical health, because hardly anybody has that, and ultimately none of us do.
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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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