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Re: Is anyone on the neratinib trial?
Hi Forher,
Where are you currently being treated? My onc. Dr. Michelle Melisko and her husband, Dr. John Park, are both at UCSF and they know quite a bit about neratinib and its use for Her2 breast cancer (enough that I am in discussions with Melisko about using it for adjuvant treatment of early stage breast cancer). You should definitely call her for a meeting. Her primary investigation is on brain mets. So, she would be, at the very least, a good starting point for you. Dr. Park is on the research end but is closely involved with the scientists at Puma, the company that created Neratinib. Good luck.
Kathryn
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Kathryn Ellman
8/2013 Diagnosed age 42 with boys aged 2.5 and 6, Stage 11b, 1 cm her2+++, 30% ER positive, 5% PR positive, Rt Breast. Also DCIS in second spot of rt breast, high grade.
9/2013 Bilateral mastectomy, 3 nodes positive
10/13 Started AC/TH, Perjeta and Herceptin
1/14 Finished Chemo
3/14 Radiation, 5 weeks
4/14 Started Tamoxifen
6/14 Discontinued Tamoxifen due to extreme joint pain, exhaustion and depression
6/14 Started Exemestane and Zolodex shots to suppress ovaries
11/14 Finished Herceptin
11/14 Discontinued Exemestane due to similar side effects as Tamoxifen.
1/15 Reconstruction
3/15 CT Scan (routine) shows possible liver mets.
3/15 PET/CT scan shows no mets - huge sigh of relief
4/15 Began Letrozole. Knee and hip joint discomfort but minimal. Otherwise, knocking on wood - so far, so good!
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