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Old 05-17-2015, 02:31 PM   #671
KatherineM
Senior Member
 
Join Date: May 2014
Posts: 94
Re: Please post your two cents on Herceptin "side effects" real or perceived!

Thanks, Andi BB! You are amazing! Such an inspiration for someone who is just starting out on this hard road.

I am really against doing more chemo, at least at this point. My onc here in Asheville recommends I go on Herceptin and Perjeta, which worked well on my breast tumor, but I'm worried that the experts in Chapel Hill will want to add a chemo drug to that. Had Taxotere, Carboplatin and H&P last year, and was not a fan! Of course, if they think it will make a big difference to the outcome, I would do it. The thing I am realizing, though, is that no matter how much the docs know, there is so much they don't know about this disease, and it makes me feel better to remember that I am in control of my care, and that it's always my decision.

All of this is made more surreal by the fact that I feel healthier right now than I ever have. Doing yoga three times a week, juicing massive amounts of veggies, taking supplements, exercising, meditating... And yet, there are these tiny little nodules hanging out in my lungs.

Thank you so much to all of you on this site, for your support and your generous sharing of your experience! It makes me hopeful in a very dark time.

Cheers,

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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