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Old 08-18-2016, 02:55 PM   #11
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: 10 years and in trouble

I'm very sorry for your progression news Mishka. In the absence of digging very deep know that excess copper in your system is stored in the brain and liver -- and copper/zinc dysregulation is at play in most breast cancer patients. HER2 particularly seems to have an affinity for low zinc and elevated copper, as does TNBC.

Can you get them to test your serum zinc and copper and ceruloplasim levels? Those are what my naturopathic oncologist has been tracking for me. When HER2 disease escapes radiation for instance, they are finding that it is doing so using the copper pathway -- so we really want to shut that down if there is something there. I did this in my body by taking extra zinc piccolineate which boosted my zinc levels and chelated out the excess copper (which was sky high when I was first diagnosed). This stuff isn't "standard of care" but it is scientifically based, even if mainstream oncology ignores it.

I agree that you are demonstrating a mutation of your original BC, and really one wants to know what they heck it is. Liver biopsies are frightening but usually they go without a hitch. Since you have been strongly ER+ it seems likely that the cell line could have mutated in that direction but really data is going to be more valuable.

The liver does have an amazing regenerative ability as an organ so the trick will be to figure out what is going on with this mutation and to shut it down.

There are some different therapies to consider in treating the liver: chemo, radiation, and interventional radiology (using ablative techniques). I'm not familiar with the medical system there but I have learned from experience that you have to be talking to the right person with the right background -- pressing to speak to specialists if needed -- to find out what your real options are. A surgeon might say cut it out, an MO would likely look at chemo options, an RO would say give it rads. An interventional radiologist though might say let's freeze the sucker -- but since these are developing practices and IR is a "newer" discipline, your docs might not go there on their own. You might need to seek private consultations which could be more expensive -- but standard of care isn't necessarily better and, sorry to say but I've been thinking about this a lot since my brain mets were found last year, not being here is a LOT more expensive.

Ask me questions and I will answer to the best of my ability or I will go look for more info for you.

Hugs,

Ann
__________________
  • 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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