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Old 03-19-2016, 06:57 AM   #31
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: My leptomeningeal journey

I had my first scans this past week since my 12/28/15 scan showed progression and my oncologist said "nothing is working" and I was recommended to have whole brain radiation.

I had a PET/CT and then MRI of the brain and spine. There are no new lesions. In the area where there was disease, in my cerebellum, there was a significant reduction in contrast enhancement and far less LM. This was amazing to see just 5-6 weeks after finishing the non-standard partial brain rads to the posterior fossa region (cerebellum, brain stem, edge of occipital lobe).

I worked up from 30 mg IT Herceptin twice weekly to 100 mg once weekly, stopping during brain rads and resuming treatment the next week. I started my modified ketogenic diet in December and I did intermittent fasting during rads. I also have had weekly 25 mg of IV vitamin C plus minerals, weekly craniosacral massage to my head and neck to keep the treated area open and draining well. I continue with my Chinese herbs, nutritional supplements based on my blood labs and what was being treated. I also have done citrus oils and zest, cannabidoil, soapberry fruits, cottage cheese and flax oil, meditation (some), and been working on my chakras (going where no Ann has gone before, I figured why not).

Amazingly it is all working. I'm in disbelief but relieved to finally get some good news after months of poor scans showing progression. My next brain and spine MRI will be in two months and I will continue weekly IT Herceptin until then, plus my keto diet and the complementary and alternative stuff. I'm not NED but I'm closer than I've been for more than two years.

Fingers crossed, wish me luck.
__________________
  • 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.
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