My leptomeningeal journey

MaineRottweilers · 01-03-2017, 05:57 AM

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

agness · 05-11-2017, 10:50 AM

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.