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Old 01-01-2017, 04:39 PM   #41
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: My leptomeningeal journey

Posting a long overdue update on me...

In July I started feeling facial numbness on the right side. My neuro-onc wasn't sure what it was and so we decided to rescan in a month. She thought it might be pseudoprogression, this is when there is leakage of the gadolinium contrast into an area that it healing, it might be tumor or not. My neuro-onc didn't order a spinal tap, evidently that can show different results than spinal fluid taken from the Ommaya reservoir in the top of the head given the weight of cancer cells. I asked about doing hyperbaric oxygen (HBOT), assuming that it would be paid for by insurance given the uncertainty -- why shouldn't it be offered? My doctor said no, she wouldn't recommend it and she kind of worried about if there was tumor there if HBOT might exacerbate it. The thing is I had researched HBOT during chest wall rads for use in the brain (the proton source had to be replaced and while waiting in the lobby I met a lot of primary brain tumor patients and had researched complementary therapies that might aid treatment). HBOT has never been shown to cause tumor growth as cancer is hypoxic, surviving in the absence of oxygen and HBOT is about forcing oxygen into your system. My other neuro-onc who was consulting on my case, in spite of the concerns about my scan, was unavailable -- I later found out he was about to go on vacation and was subsequently taking another job. Sheesh.

I proceeded with HBOT and after a single visit the facial numbness disappeared. I continued to get HBOT twice a week through August until my next brain scan at the end of August, suffering through weeks of uncertainty. That scan showed confusing results, at least when being interpreted by professionals. I eventually researched HBOT in the context of brain trauma and the images looked the same -- HBOT was doing what it does which is go into damaged areas and healing them. Since HBOT isn't prescribed and is rarely done in this context I was doing and seeing things that of course wouldn't make sense to the professionals.

I had a deep feeling that this wasn't pseudoprogression. At the beginning of the summer, after I healed most of the way from partial brain rads and the flu with subsequent sphenoid sinus infection I started to go into a slow decline again. I didn't feel like going for long walks and I wasn't feeling like doing more physical activities such as dance or qigong. I decided that perhaps I should hold off on the HBOT for a few weeks until I got a PET scan in September as no one was listening to me that things felt a little off. Meanwhile I compiled the images of my brain online and got in touch with a researcher who told me that it looked like tumor. Another doctor on the East Coast who had treated another patient with HER2 brain LM told me that no, she had not observed an increase in pseudoprogression with targeted therapy. I started having bad headaches and needed to start taking dexamethasone daily. I looked again at the images myself and things didn't look good. Finally the PET scan showed that my cerebellum on the right was lit up from the cancer growing and my two neuro-oncs realized that it was indeed progression.

At this point I was realizing that my doctors yet again really didn't know and understand how to interpret posterior fossa LM (the posterior fossa is the low back of the brain where the cerebellum and brain stem are housed). They were at least listening to me and so we settled on the following chemotherapy protocol for me:

IT Topotecan - standard dosing, based on what has worked for Nina, into the Ommaya reservoir, weekly
IT Herceptin - 100 mg
IV Avastin (bevicuzumab) every two weeks, not approved for breast cancer but used commonly to treat glioblastoma (primary brain cancer) that has evaded radiation.
IV Kadcyla - every three weeks, to try to penetrate the blood-brain barrier and also block anything that might try to re-enter my system and re-establish itself where elsewise I was NED from the neck down.

I also saw my naturopath who is involved in my treatment with HBOT and IV therapies and she recommended, as I was able:

HBOT - 1-2 times a week
DCA with Poly - once a week
High dose vitamin C with Artusenate - once a week

I have also continued with my modified ketogenic, low carb diet since December 2015.

I wanted to hit that cancer hard. The partial brain radiation had worked but this was the cell line that had escaped that therapy. My research showed that when HER2 breast cancer is able to evade radiation it is due to cells that are able to do a protein folding in the endoplasmic reticulum which protects them from oxidative stress. Avastin, HBOT, even the vitamin C, they all were about forcing the cells in my body to take in oxygen and not hunker down and hide. Everything I was doing was about forcing the cells into apoptosis and cell death.

I hit the cancer so hard that after three weeks of treatment, out of the blue, I was totally fine and then *BAM* I was dizzy and vomiting and couldn't get out of bed for a day. I tried calling the on-call oncologist but that didn't help at all, he just suggested taking a stronger anti-nausea drug. I couldn't hardly eat for several days and I lost weight, I felt weak and was losing the desire to eat and fight for my life. It was frightening. I went for Chinese Medicine treatment and they told me that my Qi, my energy, was really low -- and they have been taking care of me since my diagnosis in early 2014 so they know my body.
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