Being Busy with My Leptomeninges

     This summer, like most of my summers, has been a busy time for me.  When we're not working, Wynn and I are usually out riding our bikes, meeting friends, working in our garden, hanging out with our kids, and fitting in a long weekend away.  The past few months seemed to fly by, and although we visited friends in NY in early July, when I looked at our calendar, we haven't done all that much in way of recreation.  What is abundant are medical appointments. 

     Earlier this summer I was experiencing some new symptoms.  They were very subtle and infrequent, and somewhat difficult for me to describe.  In mid-June I had an appointment with one of my many doctors and I did my best to share with her what I was experiencing.  All of my symptoms could be explained away, but they could also all be caused by a single problem...metastatic disease to my leptomeninges.  Here's what I've learned about the leptomeninges: 

     There are three layers of tissue that cover the brain and spinal cord.  Two of the layers are the arachnoid membrane and the pia mater.  These two layers make up the leptomeninges, and along with a third membranous layer and cerebrospinal fluid, (CSF), help protect the brain and spinal cord.  Sometimes cancer cells can spread, (or metastasize), to the meninges and/or CSF.  

     Symptoms may include: 

• Headaches
• Dizziness
• Pain
• Weakness or lack of coordination in arms and legs
• Double vision
• Seizures
• Difficulties with speaking or swallowing
• Difficulty thinking
• Loss of bladder or bowel control

     I had experienced 5 of the 9 above symptoms...subtly and rarely, the most significant ones being pain in my back and a weird sense of clumsiness, and perhaps weakness, as I walked...on occasion.  So subtle was the clumsiness that I couldn't even articulate exactly how I felt, nor could I answer the doctor's more detailed questions.  

     As usual, I consulted my team of doctors.  Given that I had treatment for a metastatic brain tumor earlier this year and I continue to be on Xalkori, a targeted chemotherapy that does not cross the blood brain barrier, it was decided to work me up to rule-out metastatic disease to my leptomeninges.

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     Such a work-up entails MRI of the brain and the entire spinal column, and sometimes a spinal tap. So last week I was again in the MRI tube, but this time for a little over 3 hours. In the past, I've haven't had any problems with claustrophobia, but after the first 90 minutes in the tube, I signaled the tech and requested a short break. Being in the tube that long was definitely challenging.  

     The day after my MRIs, I was given the thumbs-up on my brain. There was no sign of leptomeningeal metastasis. The tumor that was CyberKnifed in March continues to shrink and there are no new tumors.  It took over a week to get the good news about my spine MRI.  Although there is no sign of metastatic disease to my leptomeninges, I have a bulging disc at L4-L5, likely causing my back pain and clumsiness. For now, since my symptoms have gotten better and there is a plausible, non-cancer, cause for them, I don't need to have a spinal tap.  (Yipee!)

     I am aware that my brain and spinal column are vulnerable to mets while taking Xalkori.  However, since easy access to the next medication I can try isn't quite ready, (it's not yet FDA approved), I'd like to stay on Xalkori for as long as possible. It's done me pretty well for 53 months and hopefully will keep working until the next medication is available.  

Wish me luck!

Side note:  I just read over this blog that I just wrote and I sound pretty matter of fact about the whole thing.  I guess it must be hard for me to weave into my story the sense of fear I felt when the idea that my cancer had spread to my central nervous system was first raised.  I remember taking off my sweater and the doctor saying, "Oh, you can leave that on for the exam."  My response:  "No...I'm sweating...you're making me nervous with all this leptomeninges talk."  That fear kept me from sound sleep for several weeks which didn't start to ease until I received reassuring news about my brain.  Total relief only arrived when I heard the MRI of my spinal column did not appear to show signs of metastatic disease...7 weeks after I was first alarmed. These times of scary uncertainty are not only difficult for me, but also for those close to me.  And Wynn, not only is he worried for me, but he lives with me during times when I cannot get much needed sleep and am unusually cranky.  Cancer sucks for a whole bunch of reasons.