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Old 06-28-2012, 01:13 PM   #1
Mtngrl
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Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Cancer Declarations

Kathi Kolb, the Accidental Amazon, has a new blog post that's well worth reading, especially the last bit, which says:

"Thus, for anyone out there who is not a cancerland resident. . . and thus doesn’t get it, here are a few declarations, in case you blocked them out the first or seventeenth time around, or just thought perhaps I was making it all up.
  1. No, I am not ‘all better.’
  2. Yes, I am still slogging my way through fatigue and low energy three-and-a-half years later. No, it’s not as bad as it was. Now, it’s less like being run over by a freight train and more like being flattened by the occasional stray eighteen-wheeler.
  3. Yes, my concentration just sucks sometimes. And my train of thought sometimes derails unexpectedly. Although I can still usually find my way home.
  4. When #2 or #3 are bad enough, I have to stop what I’m doing. Immediately. Not when it’s convenient for you.
  5. I am working part-time not by choice, but out of necessity due to #2, 3 and 4.
  6. That means I pay all my old bills with 1/5 less income. So if I say I can’t afford it, I can’t afford it. Period.
  7. That also means that saying, ‘Why don’t you just hire someone to [fill in the blank with exertional life/home/yard task] for you?’ is not a helpful suggestion.
  8. That also means that suggesting I should get more physical therapy for my chronic cording/arm/shoulder/chest pain is about as helpful as baying at the moon, because it involves a $500 out-of-pocket deductible and an average $30 co-pay for each visit, which I can’t afford. Besides which, it’s almost pointless, because no matter how much physical therapy is done on me, the problem always comes back.
  9. It always comes back because radiation damage is permanent. P-E-R-M-A-N-E-N-T. Write that down and stop bugging me. If you really give a shit, how about buying me a hot tub?
  10. No, I cannot work ‘some extra time’ to make up for my lost income. I can barely scrape out my part-time hours. That’s P-A-R-T time. See #2, 3, 4, 5 and 8.
  11. When I make plans to hang out with you so we can catch up after not seeing each other for a while, that doesn’t mean it’s okay to bring your secretary/sister-in-law/new boyfriend/other-person-I’ve-never-met-before to tag along without asking me beforehand so that maybe their presence will mean I won’t talk about cancer. Guess again. This is where I live and I’ll talk about whatever I damn well please. And if you don’t like it, don’t make plans with me.
  12. No, I am not cured. I am NED. There’s a difference. Look it up.
  13. No, I will not explain any of this to you again.
  14. The next time you don’t understand something, I suggest you RMFB, which stands for ‘Read my ___-ing blog.’
Ahhh…I feel much better now."
__________________
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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