Full steam ahead!

After a week of waiting, it's been a busy two days of appointments, with much learned about my treatment plan.  We were able to get some appointments moved up, and Sarah and I visited the Mayo Clinic and University of Minnesota yesterday and today.  Fortunately there seems to be general consensus among the doctors about what to do next.

What's up with the tumor?
The tumor is in the same place as last time (extending from the medulla to the upper spinal cord).  Given the appearance of the tumor and my relatively light symptoms, it is suspected that the tumor has been growing slowly (though it's impossible to tell how long) and the slow growth has allowed my body to adjust to reduced area in my brainstem.  I will have another scan next Friday, and that may give a better idea of the pace of progression.  The tumor's genetic makeup is thought to be the same, which is good news.  It will likely be responsive to treatment, as it was before, though my treatment options are different this time around.

What's next?
I'll be starting a course of chemotherapy next week.  It's the same chemotherapy I received in 2011, and I tolerated that quite well, and ran a ten mile race 6 months into the chemo, though I did lose my appetite for a period and some weight.  I'll continue to take that with monitoring of the tumor every 2 months to see how it reacts.   Radiation is not an option at the moment - I received a full dose of radiation 8 years ago, and the added toxicity with re-irradiation makes this a less desirable treatment approach than chemotherapy and targeted therapies.

New Therapies
There are new, targeted therapies that have been developed since my last treatment.  Traditionally, those therapies are administered after a biopsy, where part of the tumor is removed by a neurosurgeon.   We met with a neurosurgeon to discuss those risks, and he suggested we look into a liquid biopsy of cerebrospinal fluid (CSF) being done at Memorial Sloan Kettering.  Sarah has been communicating with the staff there, and I had a spinal tap to collect CSF this afternoon.  That fluid is on it's way to New York, where it will be sequenced along with a blood sample, ideally giving a  clearer picture of the tumor that allows my doctors to amend my treatment with therapies that target specific receptors.  Some of these therapies are more effective than others - it's really impossible to predict where this will go.  I should have the results back in 2-3 weeks, and will then have a better understanding if there are additional treatment options. 

How are you feeling?
I'm continuing to feel well, and now have some medication to help with light symptoms.  Your encouragement has meant a lot to me, and helped a great deal with getting over the hump of the news.  I'm working as normal, enjoying visits with friends, and love watching Miriam do new things.  My mother visited this weekend and we helped Miriam set up her first lemonade stand - she's a natural at concessions, it turns out.

More to come - love!