Compiling Data on HER2 Brain Mets
Hi,
I've been collecting information about HER2 brain mets and prognosis, not so much for us to think that we are represented by their statistics, but to be able to use the data to communicate with our doctors and press for more aggressive treatment of HER2 brain mets. I will start compiling quotes and references here, feel free to add any that you have that might be useful.
-Ann
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- Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
- Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
- 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
- 10/27/15 atypical uptake in right cerebellum - inflammation?
- 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
- 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
- 3/2016 - stable scan
- 5/2016 stable scan
- 7/2016 pseudoprogression?
- 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
- 11/2016 Cyberknife to temporal lobe, HBOT just prior
- 12/2016 - lesions starting to show shrinkage
- 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
- Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
- Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
Last edited by agness; 09-12-2015 at 07:41 AM..
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