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Re: Hello NEW Member Looking for info
Maureen -
Wow, your poor sister! What she is experiencing seems to me to fall far outside of the range of ordinary side effects. Do the docs say what the neck pain is attributable to? Are they from clots caused by the port? Clindamycin is what they gave me for folliculitis, where I had big pus-y sores on my head, but I used it as a gel, and had Doxycycline as well. But this doesn't sound like that.
I hope she starts feeling better soon. I ended up hooked up to IV fluids the day before yesterday b/c, after 4 treatments of no nausea or vomiting, I started feeling uncontrollable nausea and couldn't keep even water in my stomach. Since then, have been nauseated, vertiginous, and unable to eat much of anything. Bleck. And I was so proud of not having thrown up since New Year's Eve 1977!
I sincerely hope that things regulate themselves with your sister soon. Demand that the doctors tell you exactly what is causing the issues with her neck, and why this keeps happening. There needs to be a reason. Good luck, Maureen! In solidarity, Katherine
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Diagnosed 3/26/14 BC Stage 3a ER neg PR neg HER-2+
5 cm tumor in left breast, needle node biopsy positive
Started TCHP 4/25/14 - 6 rounds
Oncologist can no longer feel tumor, after 4th round
Chemo shrunk tumor to less than a mm
Lumpectomy and axillary node dissection 9/3/14
Radiation for 5 weeks, with boost
Herceptin until 4/3/15
CT Scan on 4/27 shows lung mets (lots of little ones on both sides, largest 1.6 cm) STAGE IV
Lung biopsy shows still HER2+++/ER-/PR-
Taxol with Herceptin and Perjeta May, June, July 2015
Lung mets reduced by 50%
Just H&P through Fall 2015
11/15 Progression
Back on Taxol with H&P January 2016
THP no longer working March 2016
Start Kadcyla 3/16 After first treatment, experienced low platelets, tongue turned black, had to have transfusion. Dry cough and shortness of breath for first week, improves over second and third.
4/16 Platelet transfusion after second treatment, blood blisters in mouth. Allergic reaction to platelets.
6/16 Kadcyla not working. Progression to liver, though lung mets smaller.
7/16 Start Xeloda and Tykerb.
11/16 Port infected. Taken out. Have to go off chemo.
1/17 Back on Xeloda and Tykerb
5/17 Tykerb and Herceptin
11/17 Navelbine and Herceptin
12/17 Progression in lungs, liver reevaluated, no progression
1/18 Haloven and Herceptin
2/18 Sloan Kettering consultation
3/18 Brain mets, 16 lesions, largest 16mm
3/18 Cyberknife to 16mm lesion
3/18 Haloven and Tykerb added
4/18 Scan shows all lesions significantly smaller! Some almost gone. Radiation oncologist says she's never seen anything like it
7/18 Brain scan shows progression, w/ with one new lesion. Don't want to do WBR. Will try for tucatinib.
8.15.18 Start Keytruda
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