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Old 12-10-2015, 12:57 PM   #6
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Suspicion of many scattered brain mets

I sound jaded, that is because I am.

I have been offered WBR several times now. First after they resectioned my cerebellar tumor in the summer. I declined and received LINAC SRS to the tumor bed instead.

Then last week, the proscribed plan included WBR. I declined to the RO -- who admits she doesn't know what targeted therapies can do at all. I was even lambasted by the MO (hello? not your practice area or discipline) for declining WBR.

I still have WBR in my back pocket if I want to do it, if treatment doesn't work. It isn't off the table. But consider this:

They offer WBR because it it standard of care
They offer WBR because "sometimes" it works
They offer WBR because they believe we are going to die soon anyway so it is a reasonable palliative measure in that situation.

It might buy weeks, months or if you win the jackpot -- even years. If you live long enough then the side effects will become evident, the toxicities to the brain of irradiating it are permanent and you cannot undo them.

Compare that instead to IT Herceptin, especially where there is a known PCR elsewhere in the body:

It is known to be safe
It is reversible -- you can undo it if you really want to and without harm to your body
It is well-tolerated
(and evidently it treats deep brain mets too)

The problem is that there aren't studies supporting this yet and they aren't even studying it either. They don't know how long to do treatment for, with what agents, and they don't know when to stop or how. From what I have been reading women are living 4+ more years -- even when given poorer dosing regimes than RuPaul has described. Compare that to the 3-6 months given for LM patients, or at best guess high GPA (graded prognostic assessment) of a 50% chance of living longer than 2 years and they can bite me.

Fight this girl.
__________________
  • 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 01:00 PM.. Reason: typo
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