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Old 09-27-2015, 02:10 PM   #7
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Optimum Treatment After Resection of Brain Met

I was told SRS 4-6 weeks post resection, to let things heal first. You need to do planning at least a week or so before. I waited until week 7 to start since I had guests visiting at 6 weeks and my kids were back at school by then.

Do you know what her brain lesion was like consistency or vascular-wise?

Like you, I wanted to save WBT for later since it is known to affect cognitive function. That recent study from this year on the Fred Hutch site says multiple SRS is a great way to manage brain mets.

My neuro-onc wanted me back on Herceptin, and suggested using a lumbar puncture to see if the drug was getting in through the BBB. I've done two lumbar punctures now, one week apart, looking for circulating tumor cells or evidence of Leptomeningeal invasion (LMC) but so far all clear. I'm not on any targeted therapies right now.

I'm thinking of delaying my third lumbar puncture for some weeks as it isn't showing anything useful right now. Statistically the odds are high for LMC. Empirically we know that my cancer responded with a PCR to systemic TCHP. Adjuvant Herceptin was hard on my system ultimately, giving me migraines (never had before tx) and causing my limbs to ache day and night, though no evidence of heart damage. I would rather do aggressive monitoring and then jump on it at the first sign of spread with Intrathecal therapy and consecutive systemic therapy to try to knock it out completely.

They just don't know anything and the odds are awful for central nervous system mets but they keep dishing out the same crap and expecting different results -- that's a sign of insanity, right?

[I got 5 LINAC frameless SRS treatments, about 2 weeks later I started shedding from the treated area]

I hope this is helpful.
__________________
  • 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; 09-28-2015 at 11:01 AM.. Reason: Typos
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