[agness]

Hi,

Paul says the best thing I can do is to share what I'm going through so you can learn as it happens. I hope to keep this up to date so that you can also have access to the latest in drug developments.

-Ann


I think my footer tells it plainly but after a PCR to neoadjuvant TCHP I developed a cerebellar met in Spring 2015 that was undiagnosed until July 2015. I learned that doctors are not good with understanding symptoms of cerebellar metastasis at all.

After a surgical resection (tumor was very dense, poorly vascularized, well differentiated, unusual for a met) 7 weeks later I had 5 sessions of LINAC SRS to the tumor bed.

My team didn't want me on any drugs but I knew that if I was such a strong responder to Herceptin/targeted therapies that we should do more. The only way they would agree to place an Ommaya reservoir (port into my skull) was if I had leptomeningeal (LM) disease -- basically cancerous meningitis.

My neuro-onc seemed like she would listen to us, close to the end of her career and she is tired of seeing so many people die. In contrast to standard practice she does a baseline brain MRI just 6 weeks post SRS, which revealed a new area of uptake. It is either LM or else atypical inflammation they told me. Scan again in a month. I did my best over the next month to treat it like it was my brain healing, but I had a nagging feeling about this.

The likelihood of a surgical resection of getting all of the tumor cells is like a plane having a perfect landing. I've had it happen once and we all broke out into applause -- but with brain mets, the chances were really low. When you read how they handle brain mets you see a lot of professional handwringing -- oh but for the blood brain barrier. I could only see the corpses of the dead women who had come before me. "They are planning for me to die," I told my support group. They didn't want to believe it either.

So I have this scan in October that is inconclusive and they ask me about neuro pain and I pass all the exams with flying colors. I've been practicing ballet at home something that really tests your balance, making costumes for my kids, my motor skills are great. I look in the mirror and make all the weird faces and there is no drooping. But I'm having facial nerve twinges, it moves around my face and cheek, sometimes causing brief numbness, sometimes on the bridge of my nose, next to my eye. "We aren't looking for that" they told me. Okay but then who do I talk to about it because it isn't normal for me and it is what I am experiencing. They almost have me come in before Thanksgiving but the family is coming to town and you know how it is.

November 30, 2015 I have my follow-up brain MRI done and it is a long one. They do three types of tests this time -- with contrast, based on vascularization, and based on physiological by-products. What was unclear a month before is very clear now. My symptoms continued and then last week became more persistant which a constant feeling of swelling on the right and my neck started to feel stiff. I went to the ER and told them I might pass every neuro exam but I have been atypical every step of the way, we know there is cancer there and my body is saying enough.

I have had a neck and spine MRI which came back clear. I had a PET scan 12/7 that showed no disease outside of my skull -- basically nothing outside of the right cerebellum.

Friday 12/4 I had an ommaya reservoir placed into my head with a starting dose of 20 mg of IT Herceptin. I also received my first dose of IV Kadcyla (repeated ever 21 days).

This week I will receive three doses of IT Herceptin at 30 mg each, working up to a higher dosage. My neuro-onc is willing to dose me more times of the week as the hospital is close by to my house.

Today I am having a spinal flow test started where they inject a radioactive contrast into a lumbar puncture and then over the next few days they will image me to see if there are any blockages that might preclude introduction of a cytotoxic agent due to pooling. I plan to do qigong, energetic movement sequences, to try to improve flow on my own.

I have been offered whole brain radiation and have declined it so far. I know from speaking with my MO, RO and one other HER2 brain researcher that they aren't taking PCR into account at all and my team here is even less familiar with how well the targeted therapies can work.

I had my brain tumor tissue tested a month ago by Foundation One, facilitated by my naturopathic oncologist. I do not show any genes of resistance to targeted therapies. My blood labs from last week were perfect, I've been working with a naturopathic oncologist since my diagnosis to improve my copper, zinc, Vit D, ferritin and magnesium levels -- and done a lot of extra work on my own to get there. I am basically a healthy person with a mutant cell line.

If I can get back to NED then my plan is to try to use immunotherapy to get rid of this cancerous cell line once and for all. I am very far ahead of my medical team and it can be quite frustrating but I think that my misfortune can be turned around and we might start saving lives here.

I have shifted my diet to be ketogenic with very low carbs due to the benefits that this diet can have on tumors in the central nervous system. Basically high fat, high protein and low carb.

What else do you want to know?

Ann