Treating/monitoring central nervous system mets
Here is what my plan looks like at present. Reading how patients are suddenly told they have 3-6 months to live freaks me out and makes me wonder if we are all monitored the same way. How quickly does HER2 spread anyway?
For my HER2+/HR- disease progression, CNS as the first site of mets after a PCR to systemic therapy:
1. Craniotomy to remove cerebellar tumor (3.5x5cm)
2. 5 fractions LINAC SRS to tumor bed
3. Lumbar punctures to look for leptomeningeal advancement (2 draws done, taking a break for a month and then proceeding every month or so)
4. Periodic whole brain MRIs looking for suspicious changes (1 to diagnose tumor, 1 post surgery, 1 pre rads 6 weeks later, 1 five weeks after rads, plus more)
No targeted therapies or chemo at present, brain was the first site of metastasis. Neuro-onc leaning towards systemic Herceptin again, no plans for treating high risk recurrence to CNS until signs of disease emerge.
Clinical trials seem to be designed for either before brain mets occur at all or when there is disease advancement but nothing to treat if you are presently NED but have had CNS involvement.
What about you?
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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; 09-30-2015 at 12:49 PM..
Reason: typos
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