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Old 12-10-2015, 10:54 AM   #5
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Suspicion of many scattered brain mets

The research they are using is several years out of date. They are going to offer you WBR because its the best they can offer to you right now. It might work, it might not. They can do things like give you alzheimers drugs and try to spare the hippocampus -- you will still likely experience a cognitive deficit.

I don't know where you live but right now new "Right to Try" laws are being passed across the country and they allow patients like you to try to do something different. Take a look and see if your state shows up, if not it is still probably leveragerable in your favor.

A little bird told me that Genentech knows that IT Herceptin can go after deep brain mets in a way that existing therapies for brain mets do not. They aren't reporting on this as they don't want to get in trouble with the FDA. IT Herceptin is a reach for you without leptomeningeal disease but it might save your life.
__________________
  • 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; 12-10-2015 at 12:58 PM.. Reason: adding a hyperlink, fix typo
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