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New TNBC diagnosis

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Printed Date: Oct 31 2020 at 8:12pm
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Topic: New TNBC diagnosis
Posted By: orangekiwi
Subject: New TNBC diagnosis
Date Posted: Feb 18 2020 at 4:32pm
Mom just got a TNBC diagnosis. ~1.5cm tumor Grade 2/3. I'm trying to rapidly learn about all these clinical trials and chemo options so that we are on the best path!

I had two questions for this fabulous community!!
* We are meeting a surgeon/oncologist tomorrow and I was wondering if anyone has suggestions for questions we should ask. 
* Are there tests we should make sure are done? They are doing a breast MRI as well - but i'm not sure if there are other these that should be done to understand lymph status / if it has metastasized, any sub-type information

Thank you for any advice and support!! 

Posted By: Mariote
Date Posted: Feb 19 2020 at 2:03pm
I am very sorry to hear about your mom.
If she's been just diagnosed, I'd encourage you to ask for immunotherapy. I know that Tecentriq recently got an indication for TNBC (the one and only) but 2 oncologist researchers have personally told me that, if they had 1 shot at it, they'd go for Keytruda. I've read a couple of case reports where Keytruda actually sent mTNBC into prolonged remission. It works only in 15~20% of the case but when it does, boy, we are talking remission.
Besides that, unfortunately for TNBC there's only chemo Disapprove. Meaning ( and I don't wish to sound crude or cruel) inject 1 chemo drug after the other until the patient dies.
The chemo drug selection is pretty much a guessing by the onco. Experience plays a huge role. The older the onco the better (in my experience). Recent graduates "know it all" and don't actually listen to patients and they go strictly by the book. They usually dismiss any talk about CAM off hand as quackery or worse, they smirk at you.
There is a "chemo sensitive test" or Greek test, which purports to tell which chemo drug or supplement is more suitable for the type of cancer based on a blood sample. Again, oncos will dismiss it and won't want to hear, I guess due to liability, but older oncos may be receptive to your preference of drug.
If you can have a genetic profile done, testing for mutation on a gene BRCA1 or 2, you may be eligible for an inhibitor instead of chemo (anything is better than chemo). If your tumor is genetically tested and over expresses PD-L1, you may be legible for immunotherapy (Tecentriq) which again is not chemo. Or if you have money, or can gather enough together, you can buy Keytruda and have it infused at your hospital.
If you after all start chemo, prepare for making the most of it. Research Hyperthermia, it's widely used in Germany as part of standard of care. Prepare for peripheral neuropathy, research ways to minimize it prior to the chemo infusions. 
There may be a lot of jargon on my post but it's unavoidable, kindly use google to acquaint yourself with terminology.
And last, research, research, research. Know what you are dealing with, what your blood tests mean, each one of the markers, you HAVE to be your best advocate, NOBODY else will be.
Good luck and may God bless.

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