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.

Re: My leptomeningeal journey
 

That was a really long week. I started using a cane for additional stability because my body asked for it. I was frightened. What if this was my new normal? What if treatment didn't work?

I arranged a consult with a third neuro-oncologist, new in the area, my RO team helped arrange that. Their schedulers were amazing and got me in promptly and ordered more brain imaging in late October. I saw again that the neuro-onc was hesitating about the imaging, it was like none of them can read brain scans in a way. It was useful though as a tiny lesion was showing up in my left temporal lobe, in my frontal brain. Damn. The new neuro-onc suggested I repeat my hearing test to establish a new baseline, interesting. I looked it up and the temporal lobe is involved in auditory processing, I realized that the ringing in my left ear in September wasn't from the partial brain rads but probably from this temporal lobe lesion.

The reality was that my cancer had been allowed to grow for 5-1/2 months because my spread was in the back of my brain. Waiting for symptoms to appear was useless as my original tumor in my cerebellum had gotten to be 5 cm before it almost killed me. I realized that had I had lesions the size that they were in July in my cerebral cortex (frontal brain) that I would have totally had symptoms -- doctors are completely unfamiliar with symptoms of tumors in the cerebellum.

If you have a tumor in the cerebellum from breast cancer mets, 75% of the time it is going to be HER2+. The cerebellum is a newer, relatively speaking, area of the brain. Most pediatric brain tumors grow in the cerebellum which makes me think that a pediatric neuro-oncologist probably would have more experience with posterior fossa tumors.

Without any suggestion from any of my doctors I reached back out to my RO team and reminded them that we had determined that if any lesions showed up in my brain outside of the treated area, that is anything not in the cerebellum, brain stem, that we would zap it. A planning scan was done and things looked stable but that temporal lobe lesion was still there and so we indeed hit it with Cyberknife. The procedure was done with a mask, not screwed in frame as they use in Gamma Knife, and it was painless.

Re: My leptomeningeal journey
 

Hi Ann
Good to hear from you - I had noticed you had not been posting for a while!
Not so good to hear about progression.
Thank goodness Doctors were listening to you.
Hope you are feeling better.
As someone said "onwards & upwards" Or words to that effect!
Take care
Julie

Re: My leptomeningeal journey
 

I continued with treatment, all of it, and also took my friend's suggestion to heart -- I had to use food as I did medicine, I needed to push it into me to be strong and to fight. I was determined to gain at least 10 pounds and I've just about done it. I just bumped up my carb intake a little and then I just eat and eat and eat. I was able to give up the support of the cane after a week. I tolerated treatment pretty well overall and basically just need to treat myself with dexamethasone on IT treatment days, just about 3mg with a extra liter of water and 500 mg of Tylenol keeps any headaches away.

Meanwhile, as all of this is going on I'm having to help out with my boys, attending school meetings because my 6yo threw a pencil across the room in his class, helping out my 9 yo with school projects. My life alternated between saving my life and being mommy. My kids were told that my cancer "was back" and it hit them hard, especially when I needed to have a vascular port put in -- even though that was secondary to treatment and prognosis and only to help save the veins in my right arm from so many pokes.

In November I started feeling better, it seemed to me that the HBOT was part of it. The HBOT was three fold: to force oxygen into the cells, to force IV therapies deeper into the cells, and also to help my body to heal from trauma. I also had confirmation from my MO, my cancer was growing on the outside of my brain and so as the cancer died my body should regain faculties as the trauma healed. Interesting, and something to give me hope.

I had another brain scan this past week and finally things are starting to show retreat -- lesions are shrinking and disappearing. I rationalized that something was going to fail and we just started with partial brain rads. The fact was that chemo with targeted therapies dissolved my original breast cancer -- this cell line has demonstrated that it is susceptible to chemo and I just to happen to have a type of spread that allowed it to be more easily treated in the brain. I've called this my epic battle.

My one neuro-onc said to keep doing what I'm doing because its working. My other neuro-onc apologized to me, basically admitting that she missed it. I told her that she shouldn't be sorry because she has helped me by ultimately being willing to give me what I wanted, drugs that I never would be able to prescribe and administer on my own. Having that kind of support from your docs means a lot, even if sometimes things go a little wonky.

I will resume IV therapies this week, I had to take off a couple weeks due to the kids being off school. My next scan is scheduled out for March, a more normal time frame for monitoring brain mets than I've been on which is huge. I don't know what will happen but you know what? I got to celebrate my 20th anniversary with my partner, I celebrated another Christmas and New Years with my family. I might be in triple overtime but I don't take a second of it for granted -- I'm still here.

The amazing thing is that just before Christmas I took my kids ice skating, I was actually ice skating. The next day I brought the kids up to the mountains for a skiing lesson. While I wasn't skiing myself, not this time, I was able to traverse uneven surfaces, hiking up snow drifts and stairs -- and I know I couldn't do that in October.

Here's to a better 2017.

Re: My leptomeningeal journey
 

Anne - so glad to hear that treatment is going well. Hope you and your family have a fantastic holiday!

Re: My leptomeningeal journey
 

This is an amazing story. Thank you for including us.

Amy

Re: My leptomeningeal journey
 

Ahmazing story!! (And I just shared your story with a friend going thru some brain mets ugh).
Glad you are fighting for and getting your minutes!! Glad your spirit is strong. Thanks for the inspiring post. 2017!!
CUck Fancer!!!
xoxo
Flori

Re: My leptomeningeal journey
 

ICE SKATING! Ann, this is fantastic. Your boys must be thrilled to have Mom up and mobile. Thank you for sharing your story. Reading about your effort to save yourself makes me realize that I am being really lazy in my own effort to gain mobility and restore health. I'm going to make 2017 the year I do more to live more, inspired by you. XO

Re: My leptomeningeal journey
 

The past few months have been really up and down for me. My MO counted out since my LM was originally diagnosed and said, "maybe I'll start doing this for other patients too". That is sobering to me because A. I'm not supposed to still be alive and B. they haven't been doing this therapy for other patients so other women have died even as I've lived and my docs didn't offer them anything different. Painful.

I had to stop Kadcyla treatment in February after just six doses, one night I was knitting and had no issues and the next morning my fingertips were numb. My liver had been aching for weeks at that point and I was trying to reduce frequency of Kadcyla to every four weeks as that was where the last four doses had been anyway due to kids and life getting in the way of the standard every three weeks -- my body had a different idea entirely. In my case the IV Kadcyla was prophylactic as no disease had been observed systemically (outside the brain) since the first half of 2014, it was only keeping my brain mets from getting back out into the rest of my body -- potentially.

Then I was sick with a virus from my kids in late February, just a snotty cold with a fever and I got my IT treatment into my head. I went home and then it started to feel awful. My reaction was that I had indeed injured myself with treatment, that getting IT chemo poured on top of my brain when I was sick had caused meningitis and possibly encephalitis. I communicated all this to my doctors at the time but there was nothing really to be done either way I knew. My older son after a couple weeks of being sick complained of the back of his head and spine hurting (he was totally healthy before this and got slammed by two viruses that kept him home for weeks) and I rushed him over to the children's hospital -- he was having symptoms of meningitis. Because he wasn't falling over they couldn't diagnose him, they don't do lumbar punctures on kids unless it is bad meningitis. I told the doc in the urgent care that I had a very unusual firsthand knowledge of what enflamed meninges was, this wasn't combative and she understood (well kinda, who could understand that I was living with LM -- they never meet anyone like that, or study that even, because we all die).

It was a frustrating situation to parent through to say the least. My son learned from the doctors and even his school that adults don't listen and observe and that they discount you if you don't make sense based on their training. I don't think that is what they intended to teach him but that is what they imparted to him -- deep lessons in reality and self preservation at a young age.

Then a few weeks ago they found an atypical cell in my spinal fluid check, we do those every couple of months to check on my LM, its easy to do with the Ommaya reservoir (a small benefit to having a hole in your head) -- the last time an atypical cell was found it was last July and it was indeed related to spread. Damn. Time to freak out again. I remembered that my neuro-onc had said at the time that CSF samples from the Ommaya and a lumbar puncture could be quite different from each other based on the weight of cellular debris and gravity basically. I requested a lumbar puncture the next week.

Damn, I hate recovering from lumbar punctures. What the lumbar puncture showed was no cancer, no atypical cells. What would cause atypical cells to be present? I decided to go looking and came across a medical article about how atypical cells might be in the CSF with Epstein-Barr virus. I don't think I had EBV at all but if you could find an atypical cell with one viral illness -- and I totally had symptoms of viral meningitis as did my son -- they why not with another? I looked up what viral meningitis looked like in CSF studies and compared it to my results and it was really similar.

I couldn't get a diagnosis of my viral meningitis from the medical establishment but honestly, as long as now I can understand what the heck was going on with me I don't really care. Sorry doctors, sh!t or get off the pot as far as I'm concerned.

I had another brain scan last week and it was stable again -- that's three in a row, unheard of for HER2 or LM. Yeah, there are still lesions there but they are getting a little faded. I would like if they went away totally but in the absence of headache or numbness symptoms stable is awesome. I checked with Paul and Nina had lesions that didn't do anything either -- I guess it just happens with this non-standard treatment but who cares. I am still here.