HER2 Support Group Forums - View Single Post - Other things you can do when dealing with brain mets

agness · 01-09-2016, 11:39 AM

Hi,

I don't know if treatment is going to work or not for me and my brain mets but we know that the standard of care isn't in our favor.

I have been researching other approaches to treating brain tumors, both primary and secondary (mets) for over a year and I have assembled a list of other therapies that can be employed outside of the standard of care (which doesn't really work) to help enhance patient response to treatment and can possibly improve survival.

I will provide documentation and links when I can, some of them only from animal studies. In other cases I am making intelligent leaps and there is logic behind the approach but it will be outside the bounds of what I have seen documented scientifically. In most cases there won't be clinical trials so these will all be at the patient's risk to try or not.

Since the standard of care is so unsophisticated and basically hasn't shifted much in the past 30+ years we patients should at least see what else we can do to try to shift the needle in our favor.

-Ann

01-09-2016, 11:39 AM	#1
agness Senior Member Join Date: Aug 2014 Location: Seattle, WA Posts: 285	Other things you can do when dealing with brain mets Hi, I don't know if treatment is going to work or not for me and my brain mets but we know that the standard of care isn't in our favor. I have been researching other approaches to treating brain tumors, both primary and secondary (mets) for over a year and I have assembled a list of other therapies that can be employed outside of the standard of care (which doesn't really work) to help enhance patient response to treatment and can possibly improve survival. I will provide documentation and links when I can, some of them only from animal studies. In other cases I am making intelligent leaps and there is logic behind the approach but it will be outside the bounds of what I have seen documented scientifically. In most cases there won't be clinical trials so these will all be at the patient's risk to try or not. Since the standard of care is so unsophisticated and basically hasn't shifted much in the past 30+ years we patients should at least see what else we can do to try to shift the needle in our favor. -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.